- Joined
- Oct 10, 2010
- Messages
- 9
:sign0144:Well, hello everyone! I've been lurking off and on here for a while now, and I finally have my story completed. It's a long one. If its too long for you to read - I understand and apologize. So here it goes:
I was diagnosed with Crohn’s Disease back in 1990 when I was a student in college. Growing up I remember having digestive problems, but never really gave it much thought. I also remember being very fatigued as a high school student, but the doctor never could figure anything out. Once I was diagnosed with Crohn’s, they also diagnosed me with what they thought was Hepatitis. I was eventually sent to get a 2nd opinion down at Stanford University. In light of the Crohns diagnosis they re-diagnosed my liver symptoms as PSC (Primary sclerosing cholangitis).
For the most part over the last 20 years I have had only minor flares of the Crohn’s and a few flares of the PSC. I’ve had several colonoscopies, and several ERCP’s. In fact, it seemed for the last several years as though the PSC was becoming more problematic than the Crohns. For those who are not familiar with PSC – it is a chronic inflammation of the bile ducts of the liver. Basically the bile ducts become inflamed, filled with scar tissue, the bile ducts become constricted and then the bile backs-up into the liver and causes liver damage The most evident symptom of PSC is itching. Non-stop, head to toe, but especially the extremities, itching. At one point my doctor told me that more than likely I would need a liver transplant within 5 years. That was probably 8 or 10 years ago. Today the biggest problem is my Crohns. I have been flaring for the most part for over 1 year now. Coincidence or not, I had a “routine” colonoscopy in July 2009, and have been having this flare ever since. Is it possible for them to damage something “up there” that would basically cause loss of bowel control and non-stop diarrhea? I’ve been on a double dose of Asacol (now on Asacol HD) yo-yo dosing of Prednisone (60 mg/day to 15 mg/day) since August 2009.
Then November 2009 I started developing mouth /tongue sores that were so painful and uncomfortable that I couldn’t stand to eat anything except Jamba Juice through a straw. I eventually got thru those after several weeks. I continued to have diarrhea, bleeding, and also developed a case of hemorrhoids. My GI doctor finally admitted me to the hospital mid-December 2009 for dehydration and hoped to kick start remission with IV steroids and Flagyl. I spent 4 days in the hospital followed by a couple of days at home before returning to work. It really did not seem to help much, as I still had the diarrhea. At least I was re-hydrated. I had the follow up appointment with my GI doctor who finally admitted that the current course of treatment was not cutting it. We agreed to give Remicade a shot. With the holidays and everything it took awhile for him to get the approval from the insurance company but finally late January I had my first Remicade infusion. I was very nervous yet hopeful that it would finally get my Crohns in to remission and the diarrhea under control. I think it was about a week after the 1st treatment that I started to get some relief from the big D. As I recall the 2nd treatment was at a 4 week interval and seemed to be doing the trick. Although not totally normal, my BM became relatively firm although markedly ribbonlike. Remicade seemed to work for me for a short time (maybe 2-3 months). Since then it has been having no effect on the diarrhea in spite of now having had 2 infusions with the max dosage ( 10 ml/kg of body weight).
At this time I was also referred to a colon and rectal surgeon by my primary care doctor for the huge hemorrhoids that were driving me crazy. For my first appointment, I had to do the colon prep for a sigmoidoscopy. He basically said “ Your problem is not the hemorrhoids. Your problem is that you have Crohns disease.” Really? WOW! What a revelation! Basically he prescribed some steroid enemas and said come see him in a few weeks. Did that. I came back a few weeks later. He asked me how I was doing. I said a little better but I could not tell if it was due to the Remicade or the steroid enemas. I asked about removing the hemorrhoids and he said, “ Oh, we don’t do that anymore unless they are very severe. They will just come back.” Gee, thanks. Why am I wasting my time and money here then? I cancelled all further appointments.
Other than the usual sinus infections about 1 week after Remicade, things seemed to have stabilized until April. That’s when (about a week after Remicade) I woke up in the middle of the night with my left shoulder locked and the most stabbing pain I had ever experienced in my life. Not sure what was going on or what to do, I hoped that it would loosen up as the day went on. On my way to work (after it taking 1 hour to get dressed) I realized I needed to get in to see my doctor. After being at work for an hour I left for my primary care doctors office. I decided to show up on his doorstep at 8:00 am unannounced to see what he would say. He was not totally sure what it was but said he thought it appeared to be a case of Septic Arthritis. He called ahead to the ER for me and I drove myself there. They took x-rays and did an MRI. They started me on IV antibiotics and gave me morphine for the pain. I was admitted to the hospital and was there for 3 days. Amazingly, the following morning I woke up to be able to move my shoulder and arm within a couple of hours. The hospital doctor never did make a clear diagnosis of the problem, but I tend to agree with my primary care doctor. I went back to work the following day very nervous about my employer not understanding about 2 hospital stays in less than 5 months.
Continuing to work 6 days/week 55 – 60 hours, I could feel my body getting worse and worse. By June, it was time to start bringing a change of clothes with me wherever I went since I felt I could not be more than about 30 seconds from a toilet. Trying to time travel to and from work and any other location was and is tricky at best. About 1 week after another Remicade infusion I came down with another sinus infection. I forced myself to work as usual, but this day was more severe- chills, fever, a general ill feeling. I told my employer that I would not be at work the next day (July 15th, 2010) as I felt so ill that I needed to get in to see my doctor. It turns out that that was my last day of work.
The next day I called my GI doctor and got in to see him. He wrote me a note to be off work for 1 week. I called my work and let them know and that I would Fax over the letter. A week later I saw him again and he wrote me another note for a week and he basically said if I was not doing better in 4 days that he would stick me in the hospital and pump me with Prednisone and antibiotics. “I’ve been throwing everything I know at you and if this doesn’t work I think its time for your colon to come out.”- Those were his unforgettable words. I was determined to stay out of the hospital- which I have thus far again.
Interestingly, I had noticed a couple days before that my work cell phone had stopped working, so I called my work on my wife’s cell phone to let them know what was going on with me ( my wife had driven me to the appointment and attended it as well since I was so weak.) So when I called my work, I wanted to know if the HR manager would be available for us to meet with her in person since I had this extension letter from my doctor. She said sure and in fact that she needed to talk to me also- gulp!! I had a feeling something was up. Come to find out they “pulled the rug out from under me” and had “eliminated” my position (as well as 7 others). They had shut my phone off 2 days before. My personal belongings were already boxed up for me. I actually breathed a sigh of relief when I found out, as I knew the only chance I had of getting out of this flare up was some time off work for rest and healing. I am technically out on unpaid Family Medical Leave until 10/14/10, but they have indicated that they will be unable to employ me as it will create a “hardship” on the company. Oh well – so much for job protection!
Since then, in spite of a 1 month health food kick (which did not seem to help at all), I have lost over 30 lbs and continue to be withering away daily. I am up and down most of the night running to and from the toilet, and by late morning am totally exhausted and weak and can barely get out of bed. It seems as though my body is devouring itself to get its nourishment since my muscles are so achy come morning time. I honestly feel during the time after all the nite/am diarrhea when I am so weak and exhausted that I am getting closer and closer to the grave every day.
My GI doctor now has started me on 6mp (100 mg/day) in addition to the high dose of Remicade. I have almost tapered off the Prednisone (currently at 10 mg/day-tapering 2.5mg/week) I have been feeling nauseous lately ( side effect of 6mp ???) which is further taking a lot out of me. I am so tired of having accidents and carrying a backpack of clothes/cleanup items with me wherever I go. I’ve counted 3 this week. My extended family is freaking out (especially my mom- although my wife/children probably just aren’t communicating their fears like my mom is)
This last Thursday evening I attended a seminar and had an evaluation done by an Alternative Medicine Practitioner. I have an in depth consultation/ allergy testing on Tuesday with him / results on Wednesday and am hopeful that he can help me start to reverse this downward spiral. I will keep you guys posted on how things go.
I'm looking forward to learning more about everyone and also hope some of my experiences might help others as well. :bigwave:
I was diagnosed with Crohn’s Disease back in 1990 when I was a student in college. Growing up I remember having digestive problems, but never really gave it much thought. I also remember being very fatigued as a high school student, but the doctor never could figure anything out. Once I was diagnosed with Crohn’s, they also diagnosed me with what they thought was Hepatitis. I was eventually sent to get a 2nd opinion down at Stanford University. In light of the Crohns diagnosis they re-diagnosed my liver symptoms as PSC (Primary sclerosing cholangitis).
For the most part over the last 20 years I have had only minor flares of the Crohn’s and a few flares of the PSC. I’ve had several colonoscopies, and several ERCP’s. In fact, it seemed for the last several years as though the PSC was becoming more problematic than the Crohns. For those who are not familiar with PSC – it is a chronic inflammation of the bile ducts of the liver. Basically the bile ducts become inflamed, filled with scar tissue, the bile ducts become constricted and then the bile backs-up into the liver and causes liver damage The most evident symptom of PSC is itching. Non-stop, head to toe, but especially the extremities, itching. At one point my doctor told me that more than likely I would need a liver transplant within 5 years. That was probably 8 or 10 years ago. Today the biggest problem is my Crohns. I have been flaring for the most part for over 1 year now. Coincidence or not, I had a “routine” colonoscopy in July 2009, and have been having this flare ever since. Is it possible for them to damage something “up there” that would basically cause loss of bowel control and non-stop diarrhea? I’ve been on a double dose of Asacol (now on Asacol HD) yo-yo dosing of Prednisone (60 mg/day to 15 mg/day) since August 2009.
Then November 2009 I started developing mouth /tongue sores that were so painful and uncomfortable that I couldn’t stand to eat anything except Jamba Juice through a straw. I eventually got thru those after several weeks. I continued to have diarrhea, bleeding, and also developed a case of hemorrhoids. My GI doctor finally admitted me to the hospital mid-December 2009 for dehydration and hoped to kick start remission with IV steroids and Flagyl. I spent 4 days in the hospital followed by a couple of days at home before returning to work. It really did not seem to help much, as I still had the diarrhea. At least I was re-hydrated. I had the follow up appointment with my GI doctor who finally admitted that the current course of treatment was not cutting it. We agreed to give Remicade a shot. With the holidays and everything it took awhile for him to get the approval from the insurance company but finally late January I had my first Remicade infusion. I was very nervous yet hopeful that it would finally get my Crohns in to remission and the diarrhea under control. I think it was about a week after the 1st treatment that I started to get some relief from the big D. As I recall the 2nd treatment was at a 4 week interval and seemed to be doing the trick. Although not totally normal, my BM became relatively firm although markedly ribbonlike. Remicade seemed to work for me for a short time (maybe 2-3 months). Since then it has been having no effect on the diarrhea in spite of now having had 2 infusions with the max dosage ( 10 ml/kg of body weight).
At this time I was also referred to a colon and rectal surgeon by my primary care doctor for the huge hemorrhoids that were driving me crazy. For my first appointment, I had to do the colon prep for a sigmoidoscopy. He basically said “ Your problem is not the hemorrhoids. Your problem is that you have Crohns disease.” Really? WOW! What a revelation! Basically he prescribed some steroid enemas and said come see him in a few weeks. Did that. I came back a few weeks later. He asked me how I was doing. I said a little better but I could not tell if it was due to the Remicade or the steroid enemas. I asked about removing the hemorrhoids and he said, “ Oh, we don’t do that anymore unless they are very severe. They will just come back.” Gee, thanks. Why am I wasting my time and money here then? I cancelled all further appointments.
Other than the usual sinus infections about 1 week after Remicade, things seemed to have stabilized until April. That’s when (about a week after Remicade) I woke up in the middle of the night with my left shoulder locked and the most stabbing pain I had ever experienced in my life. Not sure what was going on or what to do, I hoped that it would loosen up as the day went on. On my way to work (after it taking 1 hour to get dressed) I realized I needed to get in to see my doctor. After being at work for an hour I left for my primary care doctors office. I decided to show up on his doorstep at 8:00 am unannounced to see what he would say. He was not totally sure what it was but said he thought it appeared to be a case of Septic Arthritis. He called ahead to the ER for me and I drove myself there. They took x-rays and did an MRI. They started me on IV antibiotics and gave me morphine for the pain. I was admitted to the hospital and was there for 3 days. Amazingly, the following morning I woke up to be able to move my shoulder and arm within a couple of hours. The hospital doctor never did make a clear diagnosis of the problem, but I tend to agree with my primary care doctor. I went back to work the following day very nervous about my employer not understanding about 2 hospital stays in less than 5 months.
Continuing to work 6 days/week 55 – 60 hours, I could feel my body getting worse and worse. By June, it was time to start bringing a change of clothes with me wherever I went since I felt I could not be more than about 30 seconds from a toilet. Trying to time travel to and from work and any other location was and is tricky at best. About 1 week after another Remicade infusion I came down with another sinus infection. I forced myself to work as usual, but this day was more severe- chills, fever, a general ill feeling. I told my employer that I would not be at work the next day (July 15th, 2010) as I felt so ill that I needed to get in to see my doctor. It turns out that that was my last day of work.
The next day I called my GI doctor and got in to see him. He wrote me a note to be off work for 1 week. I called my work and let them know and that I would Fax over the letter. A week later I saw him again and he wrote me another note for a week and he basically said if I was not doing better in 4 days that he would stick me in the hospital and pump me with Prednisone and antibiotics. “I’ve been throwing everything I know at you and if this doesn’t work I think its time for your colon to come out.”- Those were his unforgettable words. I was determined to stay out of the hospital- which I have thus far again.
Interestingly, I had noticed a couple days before that my work cell phone had stopped working, so I called my work on my wife’s cell phone to let them know what was going on with me ( my wife had driven me to the appointment and attended it as well since I was so weak.) So when I called my work, I wanted to know if the HR manager would be available for us to meet with her in person since I had this extension letter from my doctor. She said sure and in fact that she needed to talk to me also- gulp!! I had a feeling something was up. Come to find out they “pulled the rug out from under me” and had “eliminated” my position (as well as 7 others). They had shut my phone off 2 days before. My personal belongings were already boxed up for me. I actually breathed a sigh of relief when I found out, as I knew the only chance I had of getting out of this flare up was some time off work for rest and healing. I am technically out on unpaid Family Medical Leave until 10/14/10, but they have indicated that they will be unable to employ me as it will create a “hardship” on the company. Oh well – so much for job protection!
Since then, in spite of a 1 month health food kick (which did not seem to help at all), I have lost over 30 lbs and continue to be withering away daily. I am up and down most of the night running to and from the toilet, and by late morning am totally exhausted and weak and can barely get out of bed. It seems as though my body is devouring itself to get its nourishment since my muscles are so achy come morning time. I honestly feel during the time after all the nite/am diarrhea when I am so weak and exhausted that I am getting closer and closer to the grave every day.
My GI doctor now has started me on 6mp (100 mg/day) in addition to the high dose of Remicade. I have almost tapered off the Prednisone (currently at 10 mg/day-tapering 2.5mg/week) I have been feeling nauseous lately ( side effect of 6mp ???) which is further taking a lot out of me. I am so tired of having accidents and carrying a backpack of clothes/cleanup items with me wherever I go. I’ve counted 3 this week. My extended family is freaking out (especially my mom- although my wife/children probably just aren’t communicating their fears like my mom is)
This last Thursday evening I attended a seminar and had an evaluation done by an Alternative Medicine Practitioner. I have an in depth consultation/ allergy testing on Tuesday with him / results on Wednesday and am hopeful that he can help me start to reverse this downward spiral. I will keep you guys posted on how things go.
I'm looking forward to learning more about everyone and also hope some of my experiences might help others as well. :bigwave:
