Hi fellow Crohnies,
My screen name is scwman (man) and I am 39 yrs old. I was diagnosed with Crohns ileitis in 1990 but was ill since 1988. Treatment with 50 mg prednisone and dipentum reduced most symptoms in 2 years. The high doses of prednisone were really bad because they messed with my head. It was hell. But with the lower dose, maybe 20 mg, those side effects completely disappeared. After another 2 yrs on a maintenance dose of 10 mg prednisone and dipentum I had no symptoms.
Crohns symptoms for me are the usual gas/loose stool plus blood in stool, fever, blue fingers (blood vessel spasms), nervousness, fatigue, joint pain, higher heart rate, and boils with necrosis. Can't forget the boils. Stangely I have almost no pain and still don't. I also have bronchial asthma related to environmental influences, mainly mold and cat. But flareups and asthma can "fight" the other one off, as if my immune system will only battle one organ at a time.
In 1998 the crohns was back. For 3 years I tried different diet plans to limit flareups. The best I could do was 1 per month lasting a week or 2. Usual diet changes had major improvements. Off the list was anything spicy, no fatty foods, no lactose, no alcohol, no binge eating (thanksgiving), no caffiene and keeping simple carbs to a minimum. But I found that if I got upset over something it was almost guarenteed that I got sick. Life does not work that way unless you live in a monestary.
So in 2001 I was back to the doctors. My crohns was characterized as mild to moderate but very stubborn. I tried several 5-ASAs and had bad reactions, such as severe joint pain in the hips and knees. So next I was on entocort and it has been great ever since. Side effects are some drowsiness, ankle swelling, and lower white blood cell counts. But they are all manageable. I thank God for the my doctor and entocort. I was on 3 pills in the morning for about 2 years. Most symptoms gone. But I tapered off to one pill at each meal, then only at breakfast and lunch. Life was GOOD! Flareups only occur maybe every 2 months. With my babies in 2008 and 2011 the crohns returned more than usual. In 2012 it was back to 3 pills in the morning. I've also found that with any constipation I will get a flareup. So I regularly use suppositories to get back on track, maybe 1 to 2 times per week. Doc says repeated use is not an issue. This is been GREAT for me. I can turn a 4 day flareup into a 1 or 2 day issue.
So far doing OK but tissue damage progresses. Just had a cancer scare and I thank God that the biopsies are negative once again. Best day today since my last son was born. I had a friend pass away a few months ago from intestinal cancer. He spent 2 years on chemo but eventually there was only skin and bone left. To witness his courage was life changing. I saw that I was a few months overdue for scope so I (actually wife did) scheduled one right away. Doc saw several more and larger nodules and did the usual biopsy. Ileum has also turned into a stiff pipe about 8 inches long. Doc is surprised it still works and my b12 and absorption is good. As I said the biopsy is negative again but time is not on my side.
On the diet side I will get more strict once again and add a day of fasting. Out are animal fats, processed grains, and any soft cheese. In are more fruits, whole grains, and v8. With regard to v8 I've found that when I drink it regularly i feel good and have more energy. Don't like the taste and Im too busy to juice. But drink it I will.
I've got a GREAT doc that I've been with since 2001. He got kicked off my insurance a few years ago so I got a new doc for 2 years. He recommended remicade but i am too scared of the cancer risk. Lucky for me I got back with the first guy 2 years go. He takes time to discuss the technical side and takes excellent notes. He's the best of any doc Ive seen. If in the Cleveland area I can pass along the recommendation.
That is my "summary". I've been lucky with crohns compared to a lot of you. But I hope this helps someone else. I've read a lot of the forums over the years but have not contributed much. With 23 years of treatment and 25 years of "dealing" I can speak with a little wisdom. My best advise is find a good doc (i've had 4 over the years) and see what is best for you. If he/she won't listen/react then find a new doc. Good diet, enough sleep, managed stress level, and a good outlook on life are huge to take on the challenge. Be proactive in changing treatments but get docs opinion before any crazy diet changes. I still fall short on my own advice but try to get back up again and again.
lots of love,
-scw
My screen name is scwman (man) and I am 39 yrs old. I was diagnosed with Crohns ileitis in 1990 but was ill since 1988. Treatment with 50 mg prednisone and dipentum reduced most symptoms in 2 years. The high doses of prednisone were really bad because they messed with my head. It was hell. But with the lower dose, maybe 20 mg, those side effects completely disappeared. After another 2 yrs on a maintenance dose of 10 mg prednisone and dipentum I had no symptoms.
Crohns symptoms for me are the usual gas/loose stool plus blood in stool, fever, blue fingers (blood vessel spasms), nervousness, fatigue, joint pain, higher heart rate, and boils with necrosis. Can't forget the boils. Stangely I have almost no pain and still don't. I also have bronchial asthma related to environmental influences, mainly mold and cat. But flareups and asthma can "fight" the other one off, as if my immune system will only battle one organ at a time.
In 1998 the crohns was back. For 3 years I tried different diet plans to limit flareups. The best I could do was 1 per month lasting a week or 2. Usual diet changes had major improvements. Off the list was anything spicy, no fatty foods, no lactose, no alcohol, no binge eating (thanksgiving), no caffiene and keeping simple carbs to a minimum. But I found that if I got upset over something it was almost guarenteed that I got sick. Life does not work that way unless you live in a monestary.
So in 2001 I was back to the doctors. My crohns was characterized as mild to moderate but very stubborn. I tried several 5-ASAs and had bad reactions, such as severe joint pain in the hips and knees. So next I was on entocort and it has been great ever since. Side effects are some drowsiness, ankle swelling, and lower white blood cell counts. But they are all manageable. I thank God for the my doctor and entocort. I was on 3 pills in the morning for about 2 years. Most symptoms gone. But I tapered off to one pill at each meal, then only at breakfast and lunch. Life was GOOD! Flareups only occur maybe every 2 months. With my babies in 2008 and 2011 the crohns returned more than usual. In 2012 it was back to 3 pills in the morning. I've also found that with any constipation I will get a flareup. So I regularly use suppositories to get back on track, maybe 1 to 2 times per week. Doc says repeated use is not an issue. This is been GREAT for me. I can turn a 4 day flareup into a 1 or 2 day issue.
So far doing OK but tissue damage progresses. Just had a cancer scare and I thank God that the biopsies are negative once again. Best day today since my last son was born. I had a friend pass away a few months ago from intestinal cancer. He spent 2 years on chemo but eventually there was only skin and bone left. To witness his courage was life changing. I saw that I was a few months overdue for scope so I (actually wife did) scheduled one right away. Doc saw several more and larger nodules and did the usual biopsy. Ileum has also turned into a stiff pipe about 8 inches long. Doc is surprised it still works and my b12 and absorption is good. As I said the biopsy is negative again but time is not on my side.
On the diet side I will get more strict once again and add a day of fasting. Out are animal fats, processed grains, and any soft cheese. In are more fruits, whole grains, and v8. With regard to v8 I've found that when I drink it regularly i feel good and have more energy. Don't like the taste and Im too busy to juice. But drink it I will.
I've got a GREAT doc that I've been with since 2001. He got kicked off my insurance a few years ago so I got a new doc for 2 years. He recommended remicade but i am too scared of the cancer risk. Lucky for me I got back with the first guy 2 years go. He takes time to discuss the technical side and takes excellent notes. He's the best of any doc Ive seen. If in the Cleveland area I can pass along the recommendation.
That is my "summary". I've been lucky with crohns compared to a lot of you. But I hope this helps someone else. I've read a lot of the forums over the years but have not contributed much. With 23 years of treatment and 25 years of "dealing" I can speak with a little wisdom. My best advise is find a good doc (i've had 4 over the years) and see what is best for you. If he/she won't listen/react then find a new doc. Good diet, enough sleep, managed stress level, and a good outlook on life are huge to take on the challenge. Be proactive in changing treatments but get docs opinion before any crazy diet changes. I still fall short on my own advice but try to get back up again and again.
lots of love,
-scw
