I posted this in Reddit's Crohn's Disease forum originally, but unfortunately the need for assistance is somewhat pressing and the subreddit is low-traffic. I was recommended to seek you folks out, and I was hoping you could share some of your wisdom with me.
Here we go:
My father is a Crohn’s Disease sufferer (as well as a heart disease patient, who has undergone one surgery to treat a “widowmaker”), and for the last few years he’s been struggling with doctors over a reasonable course of treatment. He’s now considerably underweight, and my whole family is worried. I will try very hard to be specific, but I apologize if I do a crap job of it and will happily clarify any points to those who ask.
For the course of about two years, my father was using Humira to treat his Crohns, as well as statin drugs to prevent further cardiovascular issues. It seemed like no other Crohn’s treatments held any weight, and Humira was merely the next option in line. While using it, he noticed almost no change in the prevalence and intensity of his Crohn’s symptoms, and he began to experience the side effects of some statin drugs (general pain, some muscular degradation), but they were more or less ignored as probable Crohn’s issues. This has since stopped: the doctors eventually listened, and alternatives for treatment are still being sought. (General info just in case it’s useful-- sorry.)
His Crohn’s seemed to actually worsen as he continued to take Humira. Under the course of the treatments, the poor guy had two cancer scares (and both of which were proven to be non-cancerous after biopsies). Both of these occurrences were deemed by doctors to have been caused by the usage of Humira. This was more than a little frustrating for my father, and it scared the living crap out of the rest of us. He continued the Humira for a short while as a few doctors debated what to try next, but still experienced considerable pain. Shortly thereafter, he found that his appetite had disappeared. (Enter yours truly suggesting medical marijuana. The idea was was met with curiosity, but hasn’t gone anywhere beyond that. I’m going to start prodding the issue today. ANYONE with experience in this is encouraged to PM me, or comment liberally.) (EDIT: I just saw your medical marijuana forum, and was told by a very sweet moderator who to contact. I'll be posting in this forum as soon as I speak to the recommended mod.)
My dad took one doctor’s suggestion to quit the Humira so they could explore further options. However, by this point, he was about ten to fifteen pounds underweight. A client of my father’s, who was told about my fathers experiences with Crohn’s, took the opportunity to tell my father about the Specific Carbohydrate Diet. Frustrated with all other options, he decided to try it out. We also modified it to fit his heart needs, though little was needed to do so.
For two months, my father consistently felt better than he had in 20 years. He put four pounds back on, but couldn’t seem to go any further. After getting cocky and deciding to be liberal with the diet, he began experiencing pain again.
Doctors wanted another colonoscopy, so he had another done. The staff ruled out Celiac’s Disease, which they had begun to suspect, but saw that the jejunum of his small intestine was both inflamed and lined with a series of small ulcers, with a very large ulcer toward the beginning of the region. Every doctor has told us that this is all fixable-- the jejunum will heal, given a proper course of treatment.
It’s the treatment bit they’ve argued over, though. One doctor wants dad on Humira, and the other is adamantly opposed (given his cancer scares), and a whole list of others seem to be genuinely confused as to how to move forward. None of them knew anything about the SCD diet, and have written dad’s positive experiences with it as entirely anecdotal. Now they’re considering having him try some experimental drugs, but since he’s had so much trouble with the side effects from the bevy of medications he’s taken (and had so many doctors genuinely write off his concerns about them until he stops taking them and the problems he’s experiencing magically vanish, which has happened three separate times now) that we’re afraid they’ll write off any new complaints en masse as complications from the new stuff. We’re terrified that we’ll miss an odd symptom and lose him to heart disease or cancer.
I've heard mentions of stem cell treatment and medical marijuana use. I’d really, really love to learn more about all of this. Please, please tell me what you know. For the record, my sister, mother, and I will be getting Dad back on a strict SCD diet as soon as we can. He fights any kind of food restriction like crazy, so this is going to be an uphill battle.
Also, we’re in the southern California area, so if anyone knows of doctors who are really experienced with Crohn’s, I’d love to have them mentioned.
I’m sorry if I made little sense. I will happily edit this post for clarity upon request. I’m very worried about my father, so please bear with me.
TL;DR: Dad’s got Crohn’s, bad experiences with Humira (including cancer scares), and is now very underweight and sickly. Looking for treatment suggestions, as well as southern Californian doctors that know Crohn’s inside and out.
Here we go:
My father is a Crohn’s Disease sufferer (as well as a heart disease patient, who has undergone one surgery to treat a “widowmaker”), and for the last few years he’s been struggling with doctors over a reasonable course of treatment. He’s now considerably underweight, and my whole family is worried. I will try very hard to be specific, but I apologize if I do a crap job of it and will happily clarify any points to those who ask.
For the course of about two years, my father was using Humira to treat his Crohns, as well as statin drugs to prevent further cardiovascular issues. It seemed like no other Crohn’s treatments held any weight, and Humira was merely the next option in line. While using it, he noticed almost no change in the prevalence and intensity of his Crohn’s symptoms, and he began to experience the side effects of some statin drugs (general pain, some muscular degradation), but they were more or less ignored as probable Crohn’s issues. This has since stopped: the doctors eventually listened, and alternatives for treatment are still being sought. (General info just in case it’s useful-- sorry.)
His Crohn’s seemed to actually worsen as he continued to take Humira. Under the course of the treatments, the poor guy had two cancer scares (and both of which were proven to be non-cancerous after biopsies). Both of these occurrences were deemed by doctors to have been caused by the usage of Humira. This was more than a little frustrating for my father, and it scared the living crap out of the rest of us. He continued the Humira for a short while as a few doctors debated what to try next, but still experienced considerable pain. Shortly thereafter, he found that his appetite had disappeared. (Enter yours truly suggesting medical marijuana. The idea was was met with curiosity, but hasn’t gone anywhere beyond that. I’m going to start prodding the issue today. ANYONE with experience in this is encouraged to PM me, or comment liberally.) (EDIT: I just saw your medical marijuana forum, and was told by a very sweet moderator who to contact. I'll be posting in this forum as soon as I speak to the recommended mod.)
My dad took one doctor’s suggestion to quit the Humira so they could explore further options. However, by this point, he was about ten to fifteen pounds underweight. A client of my father’s, who was told about my fathers experiences with Crohn’s, took the opportunity to tell my father about the Specific Carbohydrate Diet. Frustrated with all other options, he decided to try it out. We also modified it to fit his heart needs, though little was needed to do so.
For two months, my father consistently felt better than he had in 20 years. He put four pounds back on, but couldn’t seem to go any further. After getting cocky and deciding to be liberal with the diet, he began experiencing pain again.
Doctors wanted another colonoscopy, so he had another done. The staff ruled out Celiac’s Disease, which they had begun to suspect, but saw that the jejunum of his small intestine was both inflamed and lined with a series of small ulcers, with a very large ulcer toward the beginning of the region. Every doctor has told us that this is all fixable-- the jejunum will heal, given a proper course of treatment.
It’s the treatment bit they’ve argued over, though. One doctor wants dad on Humira, and the other is adamantly opposed (given his cancer scares), and a whole list of others seem to be genuinely confused as to how to move forward. None of them knew anything about the SCD diet, and have written dad’s positive experiences with it as entirely anecdotal. Now they’re considering having him try some experimental drugs, but since he’s had so much trouble with the side effects from the bevy of medications he’s taken (and had so many doctors genuinely write off his concerns about them until he stops taking them and the problems he’s experiencing magically vanish, which has happened three separate times now) that we’re afraid they’ll write off any new complaints en masse as complications from the new stuff. We’re terrified that we’ll miss an odd symptom and lose him to heart disease or cancer.
I've heard mentions of stem cell treatment and medical marijuana use. I’d really, really love to learn more about all of this. Please, please tell me what you know. For the record, my sister, mother, and I will be getting Dad back on a strict SCD diet as soon as we can. He fights any kind of food restriction like crazy, so this is going to be an uphill battle.
Also, we’re in the southern California area, so if anyone knows of doctors who are really experienced with Crohn’s, I’d love to have them mentioned.
I’m sorry if I made little sense. I will happily edit this post for clarity upon request. I’m very worried about my father, so please bear with me.
TL;DR: Dad’s got Crohn’s, bad experiences with Humira (including cancer scares), and is now very underweight and sickly. Looking for treatment suggestions, as well as southern Californian doctors that know Crohn’s inside and out.
