Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 My son is just starting the diet. Diagnosed with crohns 4 years ago initial treatment with prednisone then daily use of Asacol, we refused the 6mp. A year ago his lab tests showed he was definitely inflammed and not responding to steriods so we agreed to start 6mp. Five months ago he was hopsitalized with an abdominal abscess, which cleared when the 6mp was stopped and antibiotics started. Then another hopsitalization 7 weeks later after restarting 6mp this time for two abdominal fluid collections outside his intestines they believed might be fistulas. Again 6mp was stopped and the fluid collections are gone. We tried 6mp one more time with the development of severe abdominal pain within a week so we have stopped it altogether. He was put on modulin IBD only after the second hospitalization and drank that as sole nutrition for 3 months. He immediately went into remission and MRI's showed his intestines were slowly healing. The end of August he was allowed to eat and we began the SCD diet. One month into eating and he is still in remission although he does still have occasional abdominal pain or cramps. Our doctor wants him on methotrexate but we refuse due to the severe side effects he experienced from 6mp, but she isn't convinced the problems arouse from the medication and thinks diet plays no part in crohns. My heart tells me the diet is the path for his healing, but I am not a doctor. Has anyone else out there forgone the immune modulator medications for the diet? He is still taking Asacol even though his doctor thinks it is not enough. I am trying to get an appointment with a SCD friendly doctor but if they " allow " me to make an appointment outside of going through insurance it will take 5 months before we can be seen. Anyone been down this path? Suggestions are helpful! son Crohns 4yrs SCD 1 month Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2007 Report Share Posted October 6, 2007 Welcome to the group , <<My son is just starting the diet. Diagnosed with crohns 4 years ago initial treatment with prednisone then daily use of Asacol, we > refused the 6mp. A year ago his lab tests showed he was definitely > inflammed and not responding to steriods so we agreed to start 6mp. > Five months ago he was hopsitalized with an abdominal abscess, which cleared when the 6mp was stopped and antibiotics started. Then > another hopsitalization 7 weeks later after restarting 6mp this time for two abdominal fluid collections outside his intestines they > believed might be fistulas. Again 6mp was stopped and the fluid > collections are gone. We tried 6mp one more time with the > development of severe abdominal pain within a week so we have stopped it altogether. He was put on modulin IBD only after the second hospitalization and drank that as sole nutrition for 3 months. He immediately went into remission and MRI's showed his intestines were slowly healing. The end of August he was allowed to eat and we began> the SCD diet. One month into eating and he is still in remission although he does still have occasional abdominal pain or cramps.>> What foods is he eating? Does the pain/cramps seem to correlate with any certain food? <<Our doctor wants him on methotrexate but we refuse due to the severe side effects he experienced from 6mp, but she isn't convinced the problems> arouse from the medication and thinks diet plays no part in crohns. > My heart tells me the diet is the path for his healing, but I am not a doctor. Has anyone else out there forgone the immune modulator > medications for the diet? He is still taking Asacol even though his doctor thinks it is not enough. I am trying to get an appointment with a SCD friendly doctor but if they " allow " me to make an appointment outside of going through insurance it will take 5 months before we can be seen. Anyone been down this path? Suggestions are helpful!>> Some people have been able to wean off drugs with the help of SCD (with & under doc's care) and others have been able to avoid surgery and meds with the diet. Sheila, SCD FEb. 2001, UC 23yrs, PCOD 22yrs mom of and daniel > > > son Crohns 4yrs SCD 1 month > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2007 Report Share Posted October 6, 2007 > My heart tells me the diet is the path for his healing, but I am not a doctor. Hi , Science also tells us that the SCDiet is the right solution: http://microbialinfluence.com/GI/bacteria.html Click on the right part of the website to view several webpages that explain the latest scientific articles and how they relate to the SCD. Mimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2007 Report Share Posted October 6, 2007 My son has UC and once his condition was under control, the diet and the sulfa drug (like Asacol but with sulfa) keep him under control. if he starts to show problems, I go with a natural antifungal/antibiotic like oil or oregano - helps tremendously and keeps him off steroids. His case was very difficult to get under control but once it's under, it's just sort of a balancing act. His doc doesn't think the diet is noteworthy either, yet he's baffled at his progress. *rolling eyes* Wait, we also use a product called Protocel daily that is antifungal. I forgot about that. It is not antibiotic though, but does have issues if he goes without it. We believe candida is a serious problem with him and I've had conversations with Crohn's patients that believe candida is a serious issue for them as well. Just a thought... Robbie mom to , UC SCD 3 yrs Re: Re: Medication vs SCD > My heart tells me the diet is the path for his healing, but I am not a doctor. Hi , Science also tells us that the SCDiet is the right solution: http://microbialinfluence.com/GI/bacteria.html Click on the right part of the website to view several webpages that explain the latest scientific articles and how they relate to the SCD. Mimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hi, These are tough decisions. Our daughter has been on most everything. She started SCD on January 1st. We also took her off Humira as she was deathly ill even with medication. She was vomiting, bleeding, 75pds versus 90 lbs, almost unable to walk. School was out of the question. Now: She remains on medication, but the least she has ever taken. Today she is not vomiting, weighs 90 lbs, has the best blood work ever, is not anemic for the first time (and doesn’t take iron). She goes to school, does yoga. She is happy. She isn’t completely out of the woods, but she still has her intestine (as we cancelled surgery). She is being a kid. You asked if anyone is out there. We are here…..”out there”. I wouldn’t say any path is better than another, but for us, this has been a little miracle for this year. And it wasn’t easy. The SCD hasn’t been the easy, clear path, but it has given us the best life so far. And some darn good food! Janet Daughter, Crohns 4 years, SCD 10 months No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.2/1052 - Release Date: 10/5/2007 6:53 PM No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.7/1062 - Release Date: 10/10/2007 5:11 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 I love this email. How encouraging and how lovely the way you worded your experience. JT on wrote: Hi, These are tough decisions. Our daughter has been on most everything. She started SCD on January 1st. We also took her off Humira as she was deathly ill even with medication. She was vomiting, bleeding, 75pds versus 90 lbs, almost unable to walk. School was out of the question. Now: She remains on medication, but the least she has ever taken. Today she is not vomiting, weighs 90 lbs, has the best blood work ever, is not anemic for the first time (and doesn’t take iron). She goes to school, does yoga. She is happy. She isn’t completely out of the woods, but she still has her intestine (as we cancelled surgery). She is being a kid. You asked if anyone is out there. We are here…..”out there”. I wouldn’t say any path is better than another, but for us, this has been a little miracle for this year. And it wasn’t easy. The SCD hasn’t been the easy, clear path, but it has given us the best life so far. And some darn good food! Janet Daughter, Crohns 4 years, SCD 10 months No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.2/1052 - Release Date: 10/5/2007 6:53 PM No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.7/1062 - Release Date: 10/10/2007 5:11 PM Quote Link to comment Share on other sites More sharing options...
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