I was diagnosed in 1999, but unfortunately was never told. My original GI Specalist retired and the GI Specalist who took over his practice failed to follow up with me. Then in 2005 I had me second massive flare and it just happened that the GI Specalist who treated me was the Dr. who failed to follow up with me. When the truth came out I was pretty upset.
My first treatments were with Remicaid and unfortunately it made me even sicker than I was to start with. It has left my nervous system damaged. After my third treatment I lost my vision and went blind for about 6 hours. I talked to the manufacturer of Remicaid and they told me that I was having a rare side effect and to stop treatment immediately; however, my GI specalist refused to listen and insisted that I continue the treatments. On my next treatment I went blind again and lost all of the feeling in my right arm, which is the arm I received my IV infusions in. I wound up switching to a new GI Specialist.
Unfortunately for me other treatment options have not worked very well, except for Humira which worked for about 10 months. Now My crohn's has spread throughout my small intestine, stomache and esphogus. It has also destroyed the B cells in my pancrease causing type 1 diabetes. I also have high uric acid levels due to bleeding in my intestines. Subsequently the high uric acid levels and glucose levels have caused renial failure in my kidneys and liver.I am also experiencing vitamin D and B deficiency.
All of these things are causing extreme pain and I have been on Morphine for 3 years. This last summer they tried to detox me from the Morphine and start me on Subuxone. During detox my blood pressure dropped to 65 over 25 and I passed out and lapsed in to unconciousness for about 4 hours. They wound up putting me back on the Morphine and the Subuxone. So far this new treatment is not as efficient at controlling the pain.
Just two weeks ago I awoke in the middle of the night with extreme kidney pain. My wife rushed me to the ER where they started me on high doses of pain medication and after 5 hours of excrusiating pain they opted for emergency surgery. They wound up removing a blockage from my kidney and repairing a rupture in my right kidney. They placed a stint to allow things to heal, but just this week I had to go back in to the hospital for another emergency proceedure after I started bleeding internally. The stint had caused another rupture in the bottom of my kidney. Due to concerns over anesthesia, they opted for doing the proceedure under a local and it turned out to be the most horrible pain I have ever felt in my life. One of the nurses actually fainted during the proceedure. Fortunately I made it through and all the doctor could say afterwards was "At least it's over now, for the time being." (What horrible bed side manors.) Now I have been told my kidneys are so damaged that I need a transplant, but that I probably would not qualify for one as my body would just detroy the new kidney.
My doctors now say I am looking at complete renal failure. I am scared to death. They have started me on a high dose of sedatives as I have started having panic attacks. I just feel lost.
I hate this disease. It has cost me almost everything, my job, my life, but at least I still have my wife and kids. Unfortunately it is taking a toll on my family now and I can not help but wonder what's next.
I just hate this disease. It has destroyed everything. I have lost our house, our savings, even my job. IT's been extremely difficult watching as I have gone from a millionaire to state assistance just to feed my family.
I have applied for disability assistance, something I have paid in to for all my life, but the court has denied my claim insisting that I can work. I have tried to find employment, but no one will hire me with the medications I am on. I can not drive as my vision comes and goes due to swelling in my optic nerve.
All in all I have seen 5 specalists rangiing from a GI Specalist to an Endocrinologist, Rheumatologist, Optomologist, and a Neurologist. All say it is the Crohn's that is causiing all of the problems, but none of them can supply a treatment plan for me.
I would not wish this on anyone.
My first treatments were with Remicaid and unfortunately it made me even sicker than I was to start with. It has left my nervous system damaged. After my third treatment I lost my vision and went blind for about 6 hours. I talked to the manufacturer of Remicaid and they told me that I was having a rare side effect and to stop treatment immediately; however, my GI specalist refused to listen and insisted that I continue the treatments. On my next treatment I went blind again and lost all of the feeling in my right arm, which is the arm I received my IV infusions in. I wound up switching to a new GI Specialist.
Unfortunately for me other treatment options have not worked very well, except for Humira which worked for about 10 months. Now My crohn's has spread throughout my small intestine, stomache and esphogus. It has also destroyed the B cells in my pancrease causing type 1 diabetes. I also have high uric acid levels due to bleeding in my intestines. Subsequently the high uric acid levels and glucose levels have caused renial failure in my kidneys and liver.I am also experiencing vitamin D and B deficiency.
All of these things are causing extreme pain and I have been on Morphine for 3 years. This last summer they tried to detox me from the Morphine and start me on Subuxone. During detox my blood pressure dropped to 65 over 25 and I passed out and lapsed in to unconciousness for about 4 hours. They wound up putting me back on the Morphine and the Subuxone. So far this new treatment is not as efficient at controlling the pain.
Just two weeks ago I awoke in the middle of the night with extreme kidney pain. My wife rushed me to the ER where they started me on high doses of pain medication and after 5 hours of excrusiating pain they opted for emergency surgery. They wound up removing a blockage from my kidney and repairing a rupture in my right kidney. They placed a stint to allow things to heal, but just this week I had to go back in to the hospital for another emergency proceedure after I started bleeding internally. The stint had caused another rupture in the bottom of my kidney. Due to concerns over anesthesia, they opted for doing the proceedure under a local and it turned out to be the most horrible pain I have ever felt in my life. One of the nurses actually fainted during the proceedure. Fortunately I made it through and all the doctor could say afterwards was "At least it's over now, for the time being." (What horrible bed side manors.) Now I have been told my kidneys are so damaged that I need a transplant, but that I probably would not qualify for one as my body would just detroy the new kidney.
My doctors now say I am looking at complete renal failure. I am scared to death. They have started me on a high dose of sedatives as I have started having panic attacks. I just feel lost.
I hate this disease. It has cost me almost everything, my job, my life, but at least I still have my wife and kids. Unfortunately it is taking a toll on my family now and I can not help but wonder what's next.
I just hate this disease. It has destroyed everything. I have lost our house, our savings, even my job. IT's been extremely difficult watching as I have gone from a millionaire to state assistance just to feed my family.
I have applied for disability assistance, something I have paid in to for all my life, but the court has denied my claim insisting that I can work. I have tried to find employment, but no one will hire me with the medications I am on. I can not drive as my vision comes and goes due to swelling in my optic nerve.
All in all I have seen 5 specalists rangiing from a GI Specalist to an Endocrinologist, Rheumatologist, Optomologist, and a Neurologist. All say it is the Crohn's that is causiing all of the problems, but none of them can supply a treatment plan for me.
I would not wish this on anyone.
Jen XX
