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Crohn's Disease
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Posted 3/7/2015 2:13 PM (GMT 0)
I am 62 and male. about 45 years ago I was diagnosed with Crohns. I had about 1/2 of my large intestine and a section of the small intestine removed at that time. I have never taken any drugs or really consulted with a specialist type doctor about the condition. My symptoms over the years have been intermittent diarrhea and some bleeding. No bleeding now for 25 years based on yearly doctor stool tested office exams.

I have had a few colonoscopy’s over the years. The last was 10 years then 6 years ago. Both times the place where they joined the two sections of intestine has some ulcers and the joint area is small due to scar tissue.
I just had another colonoscopy with the exact same results. There is some active ulceration and narrowing of the joint area.

The previous doc two times used some type of balloon to expand the joint area. He never recommended any drugs. This doc tells me I should start taking some drug similar to prednisone. He does not believe much in doing the balloon expansion as having any lasting benefit. As I said, my only known symptom is intermittent diarrhea once or twice a month for a day or two. Really minimal symptoms in my understanding of what this disease can dish out. No real impact on my daily life or expectations of worsening in days to come based on the last 45 years.

I am looking for some help in making a decision TO or NOT TO start down the road of drugs OR find another doc that would do the balloon expansion AND/OR move in the direction of “natural” approaches like DHEA, Aloe, Medical Marijuana, etc.

Anyone’s comments would be appreciated.
The best to you all.
BinarySight
Posted 3/7/2015 8:39 PM (GMT 0)
You remind me of my cousin who went many years with Crohn's without being on maintenance drugs for most of that time and lived well into his eighties. You probably need to go on some type of medication, but which one is a question that's hard to answer. I've never done the biologics mostly due to cost, but have been on most of the others. What works well for one isn't useful for others. I currently take the old sulfa drug sulfasalazine which has worked better for me than anything else I've taken except for prednisone, but not everyone can tolerate it.

I've only had one dilatation (the balloon procedure) for the narrowing at the resection site, and it's my understanding that it's not completely without risk. If you get too much scarring it's probably not going to work anyway, but you may want to seek a second opinion. It's most likely going to take medication to stop further scarring in that area or you may face another surgery. Medical marijuana may help with pain, but it's not going to do anything to stretch out a scarred up area. Actually no medication can undo scarring that I'm aware of.
Posted 3/14/2015 1:06 PM (GMT 0)
Thanks for the reply. I have decided to go with out the drugs for now. I am taking a more 'natural' approach to work with this disease. I will go with yoga, meditation, a better daily exercise program, herbs, supplements, diet changes, acupuncture, chiropractic and ayurvedic approaches. I intend to do this for six months. I will also be looking for a second opinion physician interested in alternative holistic approaches and working with me. I live in Pennsylvania. If anyone knows of a physician interested in alternative medicines for crohn's please do let me know.

After the six months my current physician will evaluate my condition and see if what I am doing has moved me into remission. If so great, if not then I will do the drug. Entocort was the drug the physician was suggesting for me. I will continue to post to this forum with my experience and results. Wishing you all the best.

~BinarySight
Posted 3/16/2015 12:16 AM (GMT 0)
Drugs will probably help with the ulcers, but will only help with the narrowing if it is due to inflammation. If the narrowing is scar tissue, you would need to take care of that surgically. It sounds like you have been doing well without drugs, and of course medication comes with its fair share of side effects. I would recommend yearly checks of your intestines through an MRE just to make sure things are OK. Would hate for the disease to progress without you knowing it and lead to an emergency situation, which I have heard of happening on more than one occasion.
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