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Crohn's Disease Forum » Your Story » Success Stories » I finally have some real control over my CD without Rx


11-30-2012, 09:43 PM   #1
PlutoCronie
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I finally have some real control over my CD without Rx

I stopped all Rx meds about 2 weeks ago and I feel that I know my system now well enough to control my CD symptoms as well as levels of digestive heath. This Forum has helped me tremendously to somewhat understand the possible factors involved in CD and its remission standards. I am not under the care of any professionals at this time and have come to trust my own judgement. Gratefully, I was diagnosed correctly after my first GI visit, so I knew what track I was on. I also was told by my GI that I had a relatively mild case of CD, and that gauge has helped me to estimate where my health is and where I want it to be. Presently, I am about as healthy as had been prior to the CD symptoms, but I have no idea other that external factors to judge by. I do not know what my "insides" look like, but supposedly, the GI would not have given me any more colonoscopies anyway, as he also judged purely by physical symptoms, or lack of, while on the Rx. My signature below explains what I do on a daily/weekly basis to maintain my present state of health. I assume I might be in a stage of remission.
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Diagnosed with Crohn's Colitis in May 2011

Alternative Healing Regimen:
High Alkaline Diet; Alkaline Water; Herbal teas, especially Kombucha and Detox, for nutrition and inflammation; weekly internal cleansing (coffee) and internal probiotics/anti-inflammatory supplements, esp, Glucosamine; naturopathic and holistic lifestyle approach; color and music Tx.
Was initially diagnosed by a Gastroenterologist, but
currently only under the care of a GP due to lack of medical insurance.
12-01-2012, 08:06 AM   #2
afidz
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Congrats! Its awesome to hear that you achieved remission. There are several people that choose the same path you do and feel they can control the disease on their own (and I believe you can!) but it might be a good idea just to keep in touch with a GI at least annually. They don't have to prescribe you anything, but its good to have someone on your side that knows how you want to treat your body and manage your disease. Congrats again on remission and keep up what you are doing!
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
12-01-2012, 02:23 PM   #3
muppet
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I congratulate you on being proactive with your disease and recognizing the important role of diet in management of your remission.

Like Afidz, I think it's really important that you stay in touch with a GI doc and still get regular, at least annual, screening so that you can confirm your success. Unfortunately overt symptoms are not always reliable for detecting latent inflammation that can do a lot of real damage before you may realize what's going on. Even in apparent remission, low level inflammation can cause strictures and fistula and abscesses that don't present with macro symptoms until they're fairly progressed.

SO, congrats, good luck, and above all: be careful!!
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12-01-2012, 02:46 PM   #4
Scaryman
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This is great news that Alternative methods for controlling Crohn's is working for you. I stated earlier I would still check with your doctor annually. Hope this works for some others, But as I stated earlier Crohn's is very individualized.
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Diagnosed 2003
5-ASA- failed
Imuran-failed with a strange reaction-paralysis
Remicade- failed with infusion reaction.
Mesalamine-another failure
Entecourt - fail- no help.
currently on Methotrexate 25mg and Humira combo.
Folic Acid Supplement
Hyclosomine,Ultram,vicoden for pain as needed
Extended right Hemocolectomy 5/24/13 Univ.Of Chicago
11/7/13- small crohns ulcer at surgical site (active).
12-01-2012, 03:25 PM   #5
Angrybird
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It's great to hear that you are doing well I do agree with the others about keeping in contact with a GI doc so they can keep an eye on disease activity though.
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
12-01-2012, 08:04 PM   #6
PlutoCronie
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Thanks to all for your good wishes and encouragement! Regarding the GI annual visit, sorry to say but I have no insurance and the state that I live in does not give any kind of long-term state-funded medical benefits. I have already used up the coverage for the one GI visit during which I was diagnosed. I also do not yet fit the age criteria for Medicare. I have already accepted all of this emotionally and I know I am taking a chance; however, yes, I agree that CD does not always show external symptoms; but, as previously stated, the GI I had seen would not check for strictures via colonoscopy, anyways, unless I were showing symptoms. I thought that was dumb when I was first informed of this, as I believe in monitoring internal as well as external conditions, but that is how this GI "treats" his CD patients. Thanks again, to all, and I guess I will have to take all of this one day at a time.
12-01-2012, 08:44 PM   #7
my little penguin
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There is medical assistance since you were diagnosised with a chronic condition.
Please check into it.
Also although you were dx as mild that can change quickly .
Your Gi may not scope but there are many other tests ( ct, mre, blood etc...)
That he may have done .
My point being it is important to be followed by a Gi .
Please look at your state health website.
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12-01-2012, 11:44 PM   #8
PlutoCronie
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There is medical assistance since you were diagnosised with a chronic condition.
Please check into it.
Also although you were dx as mild that can change quickly .
Your Gi may not scope but there are many other tests ( ct, mre, blood etc...)
That he may have done .
My point being it is important to be followed by a Gi .
Please look at your state health website.
I will check again, but as far as I know there is no help regardless of the fact that I have a chronic condition. I do not qualify for disability and I think that is one of the factors. Personally, I was somewhat shocked that I could be just cast off to the side like that, but as far as I know I had left no stone unturned, when I looked into all of this a few months ago. Actually, there are newly elected public officials so maybe that will have an effect on available medical help. Thanks so much for your concern!
12-02-2012, 08:08 PM   #9
my little penguin
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They do have Ibd listed for kids to get special medical help just couldn't find a good listing for adults.
12-02-2012, 08:56 PM   #10
PlutoCronie
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They do have Ibd listed for kids to get special medical help just couldn't find a good listing for adults.
Yes, I saw that quite a while ago. Thanks, I really appreciate your concern! As I'm sure many people on this Forum have experienced, it is very frustrating to not have this disease taken seriously enough to be considered chronic and possibly life-threatening. That is the whole crux behind the problem even for people who do have insurance. Also, as I was not pleased by the attitudes of those who had been treating me while I still had that one-time visit, I am grateful to not have to deal with them. Also, trying to find help for Rx assistance, etc, was a total nightmare. I really am relieved to not have to deal with the medical establishment. That in itself was making me sick.
12-02-2012, 11:24 PM   #11
Emily
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Best of luck to you! Just know that the reality of Crohn's is that it comes back. I was over the whole RX and doctors thing too, decided if I was happy and feeling alright that was all that mattered. While, unlike in your situation, I was a child when I made this decision, my parents enabled this sort of thinking...that if you aren't in pain, the Crohn's is gone. Back then my diagnosis was mild Crohn's. Ten years later, I found out that during my blissful "remission" my Crohn's was there all along and the result was a stricture needing surgery, and I had to re-enter the Crohn's world. My Crohn's is now considered moderate-severe.

All this is to say that I really think you should invest some energy in finding medical assistance, at least so you can have a colonoscopy every couple of years. I'm sorry you don't like the medical establishment, but they are just what comes with having a chronic disease. I just hate to think that in a few years you'll find yourself unable to move due to a severe flare, simply due to the fact that the US medical system is a headache.
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Age 24
  • Diagnosed with Crohn's at age 7
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12-03-2012, 02:29 AM   #12
David
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This thread greatly concerns me.

You're such a wonderful person and I want you to be closely monitored. I'm really concerned that your current treatment regimen won't stave off inflammation but I of course hope I'm wrong.

I hope you're able to find some financial assistance.

*hugs*
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12-03-2012, 03:37 PM   #13
PlutoCronie
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Thanks, guys, your concern is well appreciated! However, to be perfectly honest, I would prefer doing it this way even if a GI and affordable Rx were made available to me. Going "alternative" has been interesting, to say the least. I also am very well aware of the fact that hundreds, if not thousands of people who have IBD, use alternative methods for remission. It takes a lot of work and vigilance, but I believe it can be done. The bottom line is that if I can do this on my own for another few years, I will eventually be eligible for senior medical benefits, and use them if still necessary. Hopefully, though, by that time, I will have already found a regimen that really works and won't need them.
12-15-2012, 08:20 PM   #14
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Speaking of alternative treatments, I tried acupuncture and it made things worse
Got absolutely NO relief or improvement from it. I was SHOCKED because I heard it was REALLY good for boosting the immune system.
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