An Update on the Path to Wellness
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
- Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
An Update on the Path to Wellness
Well folks its been a couple months since I've given an update on how the treatments for CC and Crohns are going.
A little introduction for the newbies: I was DX'd with CC and Crohns last April after 10+ years of random D, muscle and joint pains (lower back, knees & shoulders), iritis and uveitis. In late March of last year I really started having D to the point I could not work. After going to 2 GI doctors I finally had a colonoscopy and pill camera. The colonoscopy biopsies showed CC and the pill camera showed Crohns disease in the middle portion on the small intestine.
I found this site 2 days after a diagnosis and was put on Entocort shortly afterwards. Within a week I adopted a GF/DF/SF diet and that with the meds helped quite a bit. I was on Entocort (9mg / day) for about 7 months before the next pill camera and colonoscopy to take a look at the Crohns and see if the CC had changed any. The Crohns had advanced some but the CC has reduced the collagen band thickness about 12%.
Given the fact that the Crohns is not treated well by the Entocort when the Crohns is located in the jejunum and my GI docs concerns about long term steroid use, we agreed to try Imuran as a treatment for both the Crohns and the CC. I started Imuran in September and slowly worked up to the target dosage of 2.5mg/kg by mid December.
Overall the Imuran has done a great job of controlling not only the CC & Crohns but also has eliminated all the aches and pains in the various joints throughout my body. For me the pain relief is just about as important as the relief from the D. Overall now that things are stable I am only having 1 norman a day! What a relief. I am still sticking with the GF/SF and mostly DF diet as that is a key part of maintaining my health.
In addition to the meds and diet, I have added to my treatments acupuncture after being convinced of its benefits through a bunch of research and trying it out when I visited Gabes acupuncturist last August in Brisbane during a business trip. Overall this has bee a great tool to have when dealing with these diseases. If I miss a session or 2 now I really do notice it. While initially surprised at how beneficial it is, I would not do without this treatment at this point.
What a long way to come in only 9 months. I have gone from wondering if I would ever be able to get back to work to now enjoying life again. I will be taking the MRT testing next to help identify the landmines that lie along the path to maintaining health.
Words cannot express the gratitude that I feel for each and every one on this board for all of your help and support. Within this group I have found some the wisest and the most special people that I have ever had the privilege of meeting. This is a very special place.
Overall this success and some great support by some very special people here have given me the strength and focus to pursue a lifelong dream (there is life with MC) ... stay tuned...
Thanks again to all.
--Joe
A little introduction for the newbies: I was DX'd with CC and Crohns last April after 10+ years of random D, muscle and joint pains (lower back, knees & shoulders), iritis and uveitis. In late March of last year I really started having D to the point I could not work. After going to 2 GI doctors I finally had a colonoscopy and pill camera. The colonoscopy biopsies showed CC and the pill camera showed Crohns disease in the middle portion on the small intestine.
I found this site 2 days after a diagnosis and was put on Entocort shortly afterwards. Within a week I adopted a GF/DF/SF diet and that with the meds helped quite a bit. I was on Entocort (9mg / day) for about 7 months before the next pill camera and colonoscopy to take a look at the Crohns and see if the CC had changed any. The Crohns had advanced some but the CC has reduced the collagen band thickness about 12%.
Given the fact that the Crohns is not treated well by the Entocort when the Crohns is located in the jejunum and my GI docs concerns about long term steroid use, we agreed to try Imuran as a treatment for both the Crohns and the CC. I started Imuran in September and slowly worked up to the target dosage of 2.5mg/kg by mid December.
Overall the Imuran has done a great job of controlling not only the CC & Crohns but also has eliminated all the aches and pains in the various joints throughout my body. For me the pain relief is just about as important as the relief from the D. Overall now that things are stable I am only having 1 norman a day! What a relief. I am still sticking with the GF/SF and mostly DF diet as that is a key part of maintaining my health.
In addition to the meds and diet, I have added to my treatments acupuncture after being convinced of its benefits through a bunch of research and trying it out when I visited Gabes acupuncturist last August in Brisbane during a business trip. Overall this has bee a great tool to have when dealing with these diseases. If I miss a session or 2 now I really do notice it. While initially surprised at how beneficial it is, I would not do without this treatment at this point.
What a long way to come in only 9 months. I have gone from wondering if I would ever be able to get back to work to now enjoying life again. I will be taking the MRT testing next to help identify the landmines that lie along the path to maintaining health.
Words cannot express the gratitude that I feel for each and every one on this board for all of your help and support. Within this group I have found some the wisest and the most special people that I have ever had the privilege of meeting. This is a very special place.
Overall this success and some great support by some very special people here have given me the strength and focus to pursue a lifelong dream (there is life with MC) ... stay tuned...
Thanks again to all.
--Joe
Joe
- TooManyHats
- Rockhopper Penguin
- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
- Location: New Jersey
That is so true! You've really made great progress. I can only hope to make such significant progress in the amount of time that you have. Congrats!Words cannot express the gratitude that I feel for each and every one on this board for all of your help and support. Within this group I have found some the wisest and the most special people that I have ever had the privilege of meeting. This is a very special place.
Arlene
Progress, not perfection.
Progress, not perfection.
Hi Joe,
What an inspiring update! It must be wonderful to feel well again after all of those years. Thanks so much for sharing this good news with us, as well as reminding us of the necessity to design our own personal path to wellness. Despite the double whammy of MC and Crohn's, you have triumphed! I am staying tuned................
Love,
Polly
What an inspiring update! It must be wonderful to feel well again after all of those years. Thanks so much for sharing this good news with us, as well as reminding us of the necessity to design our own personal path to wellness. Despite the double whammy of MC and Crohn's, you have triumphed! I am staying tuned................
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Joe, thank you for your update. I am glad to hear things are still going so well. What you just have written, shows so perfectly how remission of a IBD, or IBD's in your case, can be achieved by a combination of "listening to your doctor" (exams, right medication) and playing a very very active role yourself (diet, lifestyle changes, attitude, enterolab - mrt testing, acupuncture).
I hope your road will keep on going up hill!!
harma
I hope your road will keep on going up hill!!
harma
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
- MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Joe you are an inspiration! You have been dealt a double-whammy hand and have taken it in stride by being proactive in your diet, care and methods of treatments. I really admire your persistence and the good naturedness you have in your writing and I am sure your daily life.
A wonderful addition to the family and happy you are here.
Love, Maggie
A wonderful addition to the family and happy you are here.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
- irisheyes13
- Adélie Penguin
- Posts: 212
- Joined: Fri Jan 28, 2011 2:46 pm
- Location: Pittsburgh, PA, United States
Hi Joe,
What a journey you have been on! It's incredible to see the positive results you have had after having been hit with 2 IBD's and in only 9 months. It's good to see that you have been able to achieve remission of your symptoms and are enjoying life again.
Imuran and acupuncture have both been recommended to me for MC but I haven't gone down that road...yet. Many of your posts are helping me in my journey so thank you for the update and contributions.
Congrats!
What a journey you have been on! It's incredible to see the positive results you have had after having been hit with 2 IBD's and in only 9 months. It's good to see that you have been able to achieve remission of your symptoms and are enjoying life again.
Imuran and acupuncture have both been recommended to me for MC but I haven't gone down that road...yet. Many of your posts are helping me in my journey so thank you for the update and contributions.
Congrats!
Kelly
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
Joe,
Thanks for the good news. One couldn't hope for much better results, and surely, things will only get better, as time goes on.
Just curious - have you already decided on a long-range plan? As most of us are aware, most Crohn's patients live from flare to flare, (but, of course, most Crohn's patients don't take an active role in their treatment - they just take the drugs that their doctor prescribes, when he or she prescribes them). I'm guessing that you're not going to be satisfied with that type of hit or miss performance, and you're planning to preempt that normally anticipated flare, and postpone it forever, if possible.
You present the first possibility on this board, for us to see firsthand, proof that dietary control, in conjunction with meds, can lead to a truly stable state of remission, with Crohn's disease. This will be a huge step forward, compared with the usual drugs-only treatment, that typically gives mixed results. Obviously, we're all rooting for you to show us how it's done, and you appear to be well on your way.
Tex
Thanks for the good news. One couldn't hope for much better results, and surely, things will only get better, as time goes on.
Just curious - have you already decided on a long-range plan? As most of us are aware, most Crohn's patients live from flare to flare, (but, of course, most Crohn's patients don't take an active role in their treatment - they just take the drugs that their doctor prescribes, when he or she prescribes them). I'm guessing that you're not going to be satisfied with that type of hit or miss performance, and you're planning to preempt that normally anticipated flare, and postpone it forever, if possible.
You present the first possibility on this board, for us to see firsthand, proof that dietary control, in conjunction with meds, can lead to a truly stable state of remission, with Crohn's disease. This will be a huge step forward, compared with the usual drugs-only treatment, that typically gives mixed results. Obviously, we're all rooting for you to show us how it's done, and you appear to be well on your way.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Great news Joe! You've been thoughful and diligent in managing your disease and it is paying off. I am hoping the MRT will provide some more pieces to the puzzle and you will continue to see progress.
Love,
Mary Beth
Love,
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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- Adélie Penguin
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