Hello All,
I'll try to summarize my battle with Crohn's as briefly as possible. I was diagnosed in March 2007, the end of my senior high in high school, after about a month of troubling stomach pains. What finally did me in was an obstruction and they diagnosed me with a laparoscopy, as they wanted to investigate whether or not by appendix was inflamed. I started on Pentasa and Prednisone after being discharged, but had another obstruction 4 weeks later. We went to a different hospital, a children's one, and I switched to a pediatric GI doc who began me on 125 mg of Imuran and I continued Prednisone for another 3 months.
After those episodes, I experienced 4+ years of relatively few symptoms. I even thought for a while that maybe I didn't have Crohn's, as I have had an episode of diarrhea twice in the last 5 years. I also ate whatever I wanted in college and only experienced mild discomfort if I had too much coffee, soda, or movie theater popcorn. Well, last August, on my birthday no less, I had another obstruction. I thought that this was maybe due to the stresses of getting married, just moving in with my wife-to-be, and beginning my first year of teaching. I had to add 2000 mg of Pentasa to the regimen and was also put on Entocort. I was initially dedicated to cleaning up my diet, and I began juicing a little. I wasn't very strict and began drinking coffee everyday and cheating on healthy eating. I experienced more discomfort than I would have liked during the fall months.
This February I began to flare a little. Also, I became very anemic, and after a bone marrow biopsy, a hematologist concluded that Imuran was killing my RBC production. Imuran had probably lost it's effectiveness due to the increased discomfort and previous August flare. I was put on 40 mg of Prednisone the middle of March and stopped Imuran April 1st. A CT scan in March showed inflammation in the terminal ileam, the only spot that my Crohn's has affected. I received a 1 unit blood transfusion in early April and my blood levels returned to an acceptable count in early May. The plan was to then stay on Pentasa and Prednisone start Cimzia later in the summer, so I could give my body the chance to produce more blood.
I was able to start running again May 1st, I am a marathoner and I haven't noticed any negative effects with running and Crohn's, and I thought all was going to be fine. I started to experience a little pain and discomfort at the end of May, so I asked my GI office if I could begin taking Cimzia in June. I started Cimzia June 18th, and noticed the discomfort vanish quickly. Unfortunately, it was a little to late. I was hospitalized June 26th for another obstruction and a CT showed that I also had a perforation with a fistula trying to lead into the appendix. I had an ileal resection the next day. The surgeon removed 6 inches of the terminal ileum (including the cecum and appendix). After a 6 day stay, I was released and began the healing process, with another interruption. I was having normal bowel movements 4 days after the surgery and they continued when I went home, but a week after my discharge I started experiencing stomach pain one night and had a few spells of vomiting during the day. I was again hospitalized with possible ileas, with a possible "kink" in the bowel. No one really know. The vomiting really opened up the bottom part of my incision site and I was placed on antibiotics. After 48 hours I was released and I am at home again. I have also been pumped up to 4000mg of Pentasa and will be off of Prednisone in a week. I corresponded with a different GI doc than my own in the hospital, as mine has been overseas since April with the Air Force. I see him Aug 10th. That basically summarizes my experience with Crohn's. All that being said, I have a few questions. I have poured over this forum the past few weeks, especially the surgery and diet sub forum, and I really appreciate the knowledge you all have.
1. Given that I had a rather long remission, is it plausible to believe that I will experience another prolonged remission? I know surgery can't cure anything and I know of all the percentages of Crohn's returning in the next 5-10 years and that I have a 50% chance of another surgery.
2. Also, I understand that the majority of people that use these forums are folks that experience many difficulties, and reading through many has me worried about my future ability to function. Everywhere I read it says that Crohn's patients can lead normal, productive lives. I'm worried that since I've had surgery now and I'm only 3 weeks shy of 24, that I am now sort of a serious case. Do you believe that the majority of Crohn's patients can lead normal lives? I would like to think I have a good shot as my only symptoms have been abdominal pain and I still don't have diarrhea, even after surgery.
3. I want to really change my diet to one that is almost all natural. The only meat I want to eat is deli turkey breast and chicken/fish. I have been juicing carrots and spinach leaves pretty regularly and I believe that this should be a staple for me; 2-8 oz servings a day. I would like to start eating more salads in a month or so, I haven't noticed any intolerance to salad in the past. I truly believe that diet can help my symptoms, and I want to follow a very clean one.
4. And finally, should I expect my Crohn's to get progressively worse? I have had a rough year, and I understand that surgery can alleviate my symptoms for a while, and that I can start Cimzia again in the future, and if that fails, there will probably be more biologics or other drugs available. As a teacher, coach, and husband, I am worried about my future right now. I had 4+ years of feeling great and I just don't want to except a live of debilitating disease. Also, if Imuran had such great results for a while with no side effects until the end, is it responsible to think that the other drugs will do the same?
Sorry for the long post. I am kind of scared right now and I can't ask my GI any questions for another 4 weeks. Thanks for any input you can provide!
I'll try to summarize my battle with Crohn's as briefly as possible. I was diagnosed in March 2007, the end of my senior high in high school, after about a month of troubling stomach pains. What finally did me in was an obstruction and they diagnosed me with a laparoscopy, as they wanted to investigate whether or not by appendix was inflamed. I started on Pentasa and Prednisone after being discharged, but had another obstruction 4 weeks later. We went to a different hospital, a children's one, and I switched to a pediatric GI doc who began me on 125 mg of Imuran and I continued Prednisone for another 3 months.
After those episodes, I experienced 4+ years of relatively few symptoms. I even thought for a while that maybe I didn't have Crohn's, as I have had an episode of diarrhea twice in the last 5 years. I also ate whatever I wanted in college and only experienced mild discomfort if I had too much coffee, soda, or movie theater popcorn. Well, last August, on my birthday no less, I had another obstruction. I thought that this was maybe due to the stresses of getting married, just moving in with my wife-to-be, and beginning my first year of teaching. I had to add 2000 mg of Pentasa to the regimen and was also put on Entocort. I was initially dedicated to cleaning up my diet, and I began juicing a little. I wasn't very strict and began drinking coffee everyday and cheating on healthy eating. I experienced more discomfort than I would have liked during the fall months.
This February I began to flare a little. Also, I became very anemic, and after a bone marrow biopsy, a hematologist concluded that Imuran was killing my RBC production. Imuran had probably lost it's effectiveness due to the increased discomfort and previous August flare. I was put on 40 mg of Prednisone the middle of March and stopped Imuran April 1st. A CT scan in March showed inflammation in the terminal ileam, the only spot that my Crohn's has affected. I received a 1 unit blood transfusion in early April and my blood levels returned to an acceptable count in early May. The plan was to then stay on Pentasa and Prednisone start Cimzia later in the summer, so I could give my body the chance to produce more blood.
I was able to start running again May 1st, I am a marathoner and I haven't noticed any negative effects with running and Crohn's, and I thought all was going to be fine. I started to experience a little pain and discomfort at the end of May, so I asked my GI office if I could begin taking Cimzia in June. I started Cimzia June 18th, and noticed the discomfort vanish quickly. Unfortunately, it was a little to late. I was hospitalized June 26th for another obstruction and a CT showed that I also had a perforation with a fistula trying to lead into the appendix. I had an ileal resection the next day. The surgeon removed 6 inches of the terminal ileum (including the cecum and appendix). After a 6 day stay, I was released and began the healing process, with another interruption. I was having normal bowel movements 4 days after the surgery and they continued when I went home, but a week after my discharge I started experiencing stomach pain one night and had a few spells of vomiting during the day. I was again hospitalized with possible ileas, with a possible "kink" in the bowel. No one really know. The vomiting really opened up the bottom part of my incision site and I was placed on antibiotics. After 48 hours I was released and I am at home again. I have also been pumped up to 4000mg of Pentasa and will be off of Prednisone in a week. I corresponded with a different GI doc than my own in the hospital, as mine has been overseas since April with the Air Force. I see him Aug 10th. That basically summarizes my experience with Crohn's. All that being said, I have a few questions. I have poured over this forum the past few weeks, especially the surgery and diet sub forum, and I really appreciate the knowledge you all have.
1. Given that I had a rather long remission, is it plausible to believe that I will experience another prolonged remission? I know surgery can't cure anything and I know of all the percentages of Crohn's returning in the next 5-10 years and that I have a 50% chance of another surgery.
2. Also, I understand that the majority of people that use these forums are folks that experience many difficulties, and reading through many has me worried about my future ability to function. Everywhere I read it says that Crohn's patients can lead normal, productive lives. I'm worried that since I've had surgery now and I'm only 3 weeks shy of 24, that I am now sort of a serious case. Do you believe that the majority of Crohn's patients can lead normal lives? I would like to think I have a good shot as my only symptoms have been abdominal pain and I still don't have diarrhea, even after surgery.
3. I want to really change my diet to one that is almost all natural. The only meat I want to eat is deli turkey breast and chicken/fish. I have been juicing carrots and spinach leaves pretty regularly and I believe that this should be a staple for me; 2-8 oz servings a day. I would like to start eating more salads in a month or so, I haven't noticed any intolerance to salad in the past. I truly believe that diet can help my symptoms, and I want to follow a very clean one.
4. And finally, should I expect my Crohn's to get progressively worse? I have had a rough year, and I understand that surgery can alleviate my symptoms for a while, and that I can start Cimzia again in the future, and if that fails, there will probably be more biologics or other drugs available. As a teacher, coach, and husband, I am worried about my future right now. I had 4+ years of feeling great and I just don't want to except a live of debilitating disease. Also, if Imuran had such great results for a while with no side effects until the end, is it responsible to think that the other drugs will do the same?
Sorry for the long post. I am kind of scared right now and I can't ask my GI any questions for another 4 weeks. Thanks for any input you can provide!
How are you doing now? 
