Hello everyone. I’m new here but have been diagnosed with crohn’s disease for 10 years now. I would say my condition is mild, and after reading the stories of others on various message boards, I now know that I am indeed in the mild range and I feel for all of you. I am looking for overall advice about my condition, and since I am new here, I thought I would start my own thread rather than adding on to several different ones.
Like I mentioned above, I was diagnosed first with crohn’s in 1998 after a colonoscopy and since my case was considered mild, I was started on sulfasalazine and have been on it ever since. In 2002, I lost my job and my medical insurance. Since then, I would go to my gastroenterologist and we would talk about symptoms being worse and they usually weren’t and we would continue on the sulfasalazine. About 2 years ago, I started having issues with anal inflammation. It became very painful to have bowel movements and I would see the bright red blood. I knew I had hemorrhoids from the colonoscopy so I wasn’t too worried. Earlier this year, the pain was becoming too bearable so I looked into having my hemorrhoids treated and after much research, found an office that performed infrared coagulation and would set me up on a payment plan. Well, the process took 3 months, but I am now hemorrhoid free. The problem is, my anal area is still inflamed and I still have bright red blood after a bowel movement. I also have a skin tag just inside my anus. I went to a colorectal surgeon and after a flexible sigmoidoscopy; he confirmed my crohn’s has spread into my anal area. He said I have some ulcers in my colon and a hard inflamed lump just outside my anus that I had issues with (which I always thought was an external hemorrhoid) was actually a form of an ulcer due to the crohn’s. The small lump is very painful and is probably the cause of the bleeding (I sometimes will have no blood on the stool, but blood on the bathroom tissue). Both the colorectal surgeon and my gastroenterologist both told me I am limited in my treatment due to no medical coverage. The colorectal surgeon tells me if I went on Remicade, most of my problems would clear up. On Wednesday, my gastroenterologist told me about Cimzia and how I could get the first 3 treatments for free and may be able to get their advocacy group approve me for additional treatments at reduced costs. They want me to start immediately (next week).
So my questions are:
1. Should I try Cimzia? I’m extremely nervous about taking the drug. Taking a drug that lowers your immune system seems very risky for me. Besides my anal inflammation, I have bouts of diarrhea, occasional cramps, and sometimes it is very difficult for me to “hold it” while trying to get to a bathroom. But on the other hand, it’s only on occasion I have really bad diarrhea and it if often the result of some food triggering it. It is very common for me to only have a bowel movement in the morning and another in the evening and I often go weeks without cramps (and I would describe the cramps as mild, especially compared to other stories I have read here). The small lump ulcer I have in my anal area is my biggest pain area. Is Cimzia too strong for me? It is mentioned as for “moderate to severe” crohn’s.
2. If anyone has tired Cimzia, what happened? I am speaking of both improvement of your crohn’s symptoms as well as side effects and your experiences with infections. If you have tried Remicade and/or Humira, please respond as well. Since I have not had medical insurance in so long and haven’t really been checked out fully in quite awhile, I am wondering if I might have some undiagnosed issue that might respond badly to Cimzia. I’m an obese man (I know, rare for crohn’s) and wondering if there could be complications. Since my gastroenterologist has seen me for 10 years, I wouldn’t think he would refer me if there was, but even he admitted he is not that familiar with Cimzia. I am going to try to see if I can talk with him before the Cimzia treatment. During my appointment, he asked me if I would be interested in trying Cimzia for free, but I didn’t ask many questions since I thought it would be awhile before I would get to try it.
3. Anyone else here without medical insurance who also has crohn’s? What are your experiences? What medicines/treatment work for you and your budget? I can live with my diarrhea bouts and cramps if I had to, but dream of a day I can have a non-painful bowel movement. Any medicines anyone could suggest to treat the anal inflammation?
4. I am very open to alternative medicine or treatments. Any suggestions? I am thinking more about herbs/mixes/salves rather than diet related. I tolerate most foods. My biggest food triggers seem to be nuts, popcorn, alcohol, and tomato based products. If I order a pizza or pasta dish, telling them to go light on the tomato sauce seems to do wonders BTW.
Any other suggestions or tips would be greatly appreciated.
Thanks!
Like I mentioned above, I was diagnosed first with crohn’s in 1998 after a colonoscopy and since my case was considered mild, I was started on sulfasalazine and have been on it ever since. In 2002, I lost my job and my medical insurance. Since then, I would go to my gastroenterologist and we would talk about symptoms being worse and they usually weren’t and we would continue on the sulfasalazine. About 2 years ago, I started having issues with anal inflammation. It became very painful to have bowel movements and I would see the bright red blood. I knew I had hemorrhoids from the colonoscopy so I wasn’t too worried. Earlier this year, the pain was becoming too bearable so I looked into having my hemorrhoids treated and after much research, found an office that performed infrared coagulation and would set me up on a payment plan. Well, the process took 3 months, but I am now hemorrhoid free. The problem is, my anal area is still inflamed and I still have bright red blood after a bowel movement. I also have a skin tag just inside my anus. I went to a colorectal surgeon and after a flexible sigmoidoscopy; he confirmed my crohn’s has spread into my anal area. He said I have some ulcers in my colon and a hard inflamed lump just outside my anus that I had issues with (which I always thought was an external hemorrhoid) was actually a form of an ulcer due to the crohn’s. The small lump is very painful and is probably the cause of the bleeding (I sometimes will have no blood on the stool, but blood on the bathroom tissue). Both the colorectal surgeon and my gastroenterologist both told me I am limited in my treatment due to no medical coverage. The colorectal surgeon tells me if I went on Remicade, most of my problems would clear up. On Wednesday, my gastroenterologist told me about Cimzia and how I could get the first 3 treatments for free and may be able to get their advocacy group approve me for additional treatments at reduced costs. They want me to start immediately (next week).
So my questions are:
1. Should I try Cimzia? I’m extremely nervous about taking the drug. Taking a drug that lowers your immune system seems very risky for me. Besides my anal inflammation, I have bouts of diarrhea, occasional cramps, and sometimes it is very difficult for me to “hold it” while trying to get to a bathroom. But on the other hand, it’s only on occasion I have really bad diarrhea and it if often the result of some food triggering it. It is very common for me to only have a bowel movement in the morning and another in the evening and I often go weeks without cramps (and I would describe the cramps as mild, especially compared to other stories I have read here). The small lump ulcer I have in my anal area is my biggest pain area. Is Cimzia too strong for me? It is mentioned as for “moderate to severe” crohn’s.
2. If anyone has tired Cimzia, what happened? I am speaking of both improvement of your crohn’s symptoms as well as side effects and your experiences with infections. If you have tried Remicade and/or Humira, please respond as well. Since I have not had medical insurance in so long and haven’t really been checked out fully in quite awhile, I am wondering if I might have some undiagnosed issue that might respond badly to Cimzia. I’m an obese man (I know, rare for crohn’s) and wondering if there could be complications. Since my gastroenterologist has seen me for 10 years, I wouldn’t think he would refer me if there was, but even he admitted he is not that familiar with Cimzia. I am going to try to see if I can talk with him before the Cimzia treatment. During my appointment, he asked me if I would be interested in trying Cimzia for free, but I didn’t ask many questions since I thought it would be awhile before I would get to try it.
3. Anyone else here without medical insurance who also has crohn’s? What are your experiences? What medicines/treatment work for you and your budget? I can live with my diarrhea bouts and cramps if I had to, but dream of a day I can have a non-painful bowel movement. Any medicines anyone could suggest to treat the anal inflammation?
4. I am very open to alternative medicine or treatments. Any suggestions? I am thinking more about herbs/mixes/salves rather than diet related. I tolerate most foods. My biggest food triggers seem to be nuts, popcorn, alcohol, and tomato based products. If I order a pizza or pasta dish, telling them to go light on the tomato sauce seems to do wonders BTW.
Any other suggestions or tips would be greatly appreciated.
Thanks!
