- Joined
- Jan 8, 2012
- Messages
- 1
Hi all – I’ve recently found this community, and I can’t tell you how grateful I am to have such a wonderful resource available at my fingertips. The main reason for my post is that I’ve recently been faced with some difficult decisions that I could really use some your expertise and guidance in finding my way. Let me back up and tell you my story:
I was first diagnosed with Crohn’s back in 1997. It was my junior year of college when I drove myself to the emergency room at 4 am one morning with excruciating pain along the lower right portion of my stomach (along my beltline). By the time I was admitted, I had 104 degree temperature, and before any of my family or friends arrived, the surgeon had already begun operating on what was initially thought to be an emergency appendectomy. When I woke up, they explained to me that they couldn’t even find my appendix and that there was a mass about the size of a grapefruit that had enveloped my appendix and surrounding area which is thought to be what had contained the contamination that arises from a ruptured appendix. The surgeon said that he couldn’t even find my appendix in the mass. Through the course of the procedure, the surgeon also removed about 4-5 inches of my small intestine, and 2-3 inches of my large intestine at the point where they join. I believe that he said my cecum was also removed. From the abscess that had been removed, there were granulomas that were biopsied and determined to be consistent with crohn’s disease. I was in the hospital for about a week before they released me, and at that point, I began taking Pentasa.
From that point, I was hopeful that the Crohn’s had been removed and that I wouldn’t have any more trouble with it. I began thinking that more and more as years went by without any symptoms other than some occasional discomfort around the region of the surgery. My medical situation remained uneventful until 2004 when I began having pain in my rectum to the point where I couldn’t sit without extreme pain. I ended up going to the emergency room again with 102 degree fever, and I was diagnosed with a perirectal horseshoe type ischioanal abscess that was treated with a ½ inch Penrose drain. I was admitted to the hospital and then released after several days of recovery. Following this procedure, I then went several more years having virtually no symptoms of active Crohn’s disease.
Following the surgery to address the perirectal abscess, I remained symptom free up until the summer of 2011, when I began having issues with intense pain in my eyes to the point where I couldn’t open them due to the pain. As a result, I was in and out of the Opthamologists office getting treatment for Recurrent Corneal Erosion (RCE) which involves basically putting a contact lens in my eye to keep my eyelid from re-injuring the epithelial layer of my cornea. Once the contact lens is inserted, it’s basically back to normal within 3-4 days. In an effort to determine why this was happening, I began to google search RCA/epithelium in combinations with the medications that I was taking, and I saw a few incidences of an Acid Reflux medication that was suspected of weakening epithelium when taken regularly. I also came across some additional information relating to the effect of Pentasa on the epithelium. With my Crohn’s being relatively under control, I decided to stop taking Pentasa and Refux medicine to see if I had another incident with one of my eyes. I eventually had another recurrence and decided to begin taking my Pentasa again in order to avoid a relapse. To this day, I have no idea whether or not this is related to my Crohn’s disease although the eye doctors that I’ve seen tend to think it’s not related, but I still have my doubts.
Other than the issue with my eyes, I had remained relatively symptom free from my surgery in 2004 up until late 2011 when I noticed a large mass under the skin on the inner portion of my right buttock. My GI doc told me that it was a surgical issue and set me up with an apt to see a surgeon the following morning. The surgeon tried to penetrate the area with a needle to extract abscess fluid, but he was unable to and recommended Flagyl for 7 days to see if that would help. After I stopped taking Flagyl, the pain continued to get worse to the point that I returned to the surgeon. At this point, he could see that there was something under the skin and decided to make 2 small incisions in order to allow whatever was causing the pain to drain. After testing the fluid, he determined that it was intestinal bacteria that had penetrated the skin which somehow had resulted in an infection. After several weeks of continuous drainage, I became concerned and went back to see him. At this point he encouraged me to have a CT scan of the area which identified a long fistula tract that extended all the way to the anal canal. This diagnosis was approximately 2-3 months ago, and I have since had a colonoscopy which identified a narrow ulcerated area. Now that I am a Father of two young boys, I’ve decided to take this most recent bout with Crohn’s a little more seriously, and as a result, I’ve begun reading everything I can find in order to obtain some direction. I’ve recently started taking numerous vitamins in order to attempt to get things under control.
My biggest concerns at this point are relating to treatment. My GI doctor has encouraged me to begin taking Remicade, and I’ve arranged to have my first infusion on January 25. The doc told me the risk of lymphoma is 1 and 200,000 which surprised me (I thought it was a higher risk). Regardless of the probability, I’ve recently begun getting cold feet for a number of reasons: 1. I’ve only recently begun taking a full course of vitamin supplements which seem to have helped to some degree, and I’m unsure of what if any affect that the vitamins will have on the fistula over a longer term. 2. My quality of life is not terrible other than having to bandage the area where the fistula drains. Are the risks associated with more aggressive treatment worth the benefit? 3. Are there serious risks involved with leaving a fistula untreated? 4. Could my eye problem be more susceptible to infection due to a biological agent/immune suppressor? 5 Can certain vitamins weaken the effect of biological agents/immune suppressors (Is there any point to taking vitamins promoting a healthy immune system at the same time you are suppressing your immune system?)6. I had an appt at the Mayo Clinic in December that I had to cancel due to the fact that I wasn't able to get all of my records together in time. Is there any point to going to Mayo when the only treatment that I've tried is Pentasa?
Thank you for taking the time to get to know my situation. I look forward to your comments/questions/suggestions/support.
I was first diagnosed with Crohn’s back in 1997. It was my junior year of college when I drove myself to the emergency room at 4 am one morning with excruciating pain along the lower right portion of my stomach (along my beltline). By the time I was admitted, I had 104 degree temperature, and before any of my family or friends arrived, the surgeon had already begun operating on what was initially thought to be an emergency appendectomy. When I woke up, they explained to me that they couldn’t even find my appendix and that there was a mass about the size of a grapefruit that had enveloped my appendix and surrounding area which is thought to be what had contained the contamination that arises from a ruptured appendix. The surgeon said that he couldn’t even find my appendix in the mass. Through the course of the procedure, the surgeon also removed about 4-5 inches of my small intestine, and 2-3 inches of my large intestine at the point where they join. I believe that he said my cecum was also removed. From the abscess that had been removed, there were granulomas that were biopsied and determined to be consistent with crohn’s disease. I was in the hospital for about a week before they released me, and at that point, I began taking Pentasa.
From that point, I was hopeful that the Crohn’s had been removed and that I wouldn’t have any more trouble with it. I began thinking that more and more as years went by without any symptoms other than some occasional discomfort around the region of the surgery. My medical situation remained uneventful until 2004 when I began having pain in my rectum to the point where I couldn’t sit without extreme pain. I ended up going to the emergency room again with 102 degree fever, and I was diagnosed with a perirectal horseshoe type ischioanal abscess that was treated with a ½ inch Penrose drain. I was admitted to the hospital and then released after several days of recovery. Following this procedure, I then went several more years having virtually no symptoms of active Crohn’s disease.
Following the surgery to address the perirectal abscess, I remained symptom free up until the summer of 2011, when I began having issues with intense pain in my eyes to the point where I couldn’t open them due to the pain. As a result, I was in and out of the Opthamologists office getting treatment for Recurrent Corneal Erosion (RCE) which involves basically putting a contact lens in my eye to keep my eyelid from re-injuring the epithelial layer of my cornea. Once the contact lens is inserted, it’s basically back to normal within 3-4 days. In an effort to determine why this was happening, I began to google search RCA/epithelium in combinations with the medications that I was taking, and I saw a few incidences of an Acid Reflux medication that was suspected of weakening epithelium when taken regularly. I also came across some additional information relating to the effect of Pentasa on the epithelium. With my Crohn’s being relatively under control, I decided to stop taking Pentasa and Refux medicine to see if I had another incident with one of my eyes. I eventually had another recurrence and decided to begin taking my Pentasa again in order to avoid a relapse. To this day, I have no idea whether or not this is related to my Crohn’s disease although the eye doctors that I’ve seen tend to think it’s not related, but I still have my doubts.
Other than the issue with my eyes, I had remained relatively symptom free from my surgery in 2004 up until late 2011 when I noticed a large mass under the skin on the inner portion of my right buttock. My GI doc told me that it was a surgical issue and set me up with an apt to see a surgeon the following morning. The surgeon tried to penetrate the area with a needle to extract abscess fluid, but he was unable to and recommended Flagyl for 7 days to see if that would help. After I stopped taking Flagyl, the pain continued to get worse to the point that I returned to the surgeon. At this point, he could see that there was something under the skin and decided to make 2 small incisions in order to allow whatever was causing the pain to drain. After testing the fluid, he determined that it was intestinal bacteria that had penetrated the skin which somehow had resulted in an infection. After several weeks of continuous drainage, I became concerned and went back to see him. At this point he encouraged me to have a CT scan of the area which identified a long fistula tract that extended all the way to the anal canal. This diagnosis was approximately 2-3 months ago, and I have since had a colonoscopy which identified a narrow ulcerated area. Now that I am a Father of two young boys, I’ve decided to take this most recent bout with Crohn’s a little more seriously, and as a result, I’ve begun reading everything I can find in order to obtain some direction. I’ve recently started taking numerous vitamins in order to attempt to get things under control.
My biggest concerns at this point are relating to treatment. My GI doctor has encouraged me to begin taking Remicade, and I’ve arranged to have my first infusion on January 25. The doc told me the risk of lymphoma is 1 and 200,000 which surprised me (I thought it was a higher risk). Regardless of the probability, I’ve recently begun getting cold feet for a number of reasons: 1. I’ve only recently begun taking a full course of vitamin supplements which seem to have helped to some degree, and I’m unsure of what if any affect that the vitamins will have on the fistula over a longer term. 2. My quality of life is not terrible other than having to bandage the area where the fistula drains. Are the risks associated with more aggressive treatment worth the benefit? 3. Are there serious risks involved with leaving a fistula untreated? 4. Could my eye problem be more susceptible to infection due to a biological agent/immune suppressor? 5 Can certain vitamins weaken the effect of biological agents/immune suppressors (Is there any point to taking vitamins promoting a healthy immune system at the same time you are suppressing your immune system?)6. I had an appt at the Mayo Clinic in December that I had to cancel due to the fact that I wasn't able to get all of my records together in time. Is there any point to going to Mayo when the only treatment that I've tried is Pentasa?
Thank you for taking the time to get to know my situation. I look forward to your comments/questions/suggestions/support.
