New To The Forum, New To Crohn's

[MACBAMR]

Hello All,
My name is Michaela, I`m 17 and I live in California. I just found out I have Crohn's about a month ago. I have so many questions about how this will effect me in the future. I am taking 3 pills 3 times a day. So far I feel fatigued all the time and it seems that everything I eat doesn't sit well. The more I talk to people the more they suggest alternative methods such as health spas and acupuncture. Any advice would be great, especially from people my age!

- Michaela

 

[Jeff D.]

Welcome to the forum Michaela. What meds are you taking.

I don't know how much health spas or acupuncture could help you except for stress which seems to be a big part of this disease.

I know it seems counter intuitive to what you would think but if you are able to excercise it will help you out tremendously with stress and your fatigue. Try not to stress out in school especially since your 17 I bet your going to be applying to college next year or going to college next year. Both are very stressfull times as I have learned first hand being in a flare after going to my first semester of college. Any questions you have don't be afraid to ask. We all have a very embarrassing disease and most of us aren't to reserved of talking about any problems we are having.

Best of luck

 

[jed]

Any questions you have don't be afraid to ask. We all have a very embarrassing disease and most of us aren't to reserved of talking about any problems we are having.

quoted for absolute truth. no reason to be shy or afraid when your in like minded company.

welcome michaela, i've only very recently joined here myself, and there is an absolute treasure trove of knowledge in this website. i wish i had found it so soon after diagnosis like you have!

 

[Guest]

hi michaela and welcome

i echo previous posts - the people on this forum are superb, really helpful and supportive, and hopefully you'll find some answers and reassurance as you read/post...

there are quite a few members in their teens too - so you're not alone with having crohns so young.

the tiredness is such a common effect, i think most people who have crohns have the exhaustion it brings, sometimes. and regarding diet - it does take a little time to figure out what suits you and what doesnt. i think the key thing to remember is go easy on yourself, treat your body to rest when you can, and foods which are easy to digest, & nourishing.

 

[Kev]

Hey Michaela Welcome to the forum... Health spas and acupuncture may help, its not something that I recall reading about other folks on here trying with success.
worst case, they may make you feel 'better' without affecting your disease one way or the other. Now, keep in mind that i'm an ancient relic... so my advice is probably not going to carry much weight.. BUT, you may find improvement if you take an active role in fighting this disease. Find out what meds you are on AND 'why' your doctor put you on them... 'WHAT' your doctor expects from them... what 'he/she' expects from you. And what the short term plans are. I also suggest you start a daily diary of the foods, meds, EVERYTHING that goes into your body... and a follow-up of how your body, your disease, reacts to it.
Think you'll find in relatively short order what your personal trigger items are, and how to minimize the effects, or at least what to expect, after having them.

 

[D Bergy]

One thing I always recommend is to stop drinking milk. It is likely that it is a bacteria in milk that starts this ball rolling. At least that is what conclusion I have come to.

Dan

 

[JasonOH]

One thing I always recommend is to stop drinking milk. It is likely that it is a bacteria in milk that starts this ball rolling. At least that is what conclusion I have come to.

Dan

Although this may be possible, I certainly do not believe that it is the sole magic bullet to Crohn's or IBS/IBD. I was on a medication that was responsible for my development of IBD -- Accutane. It is well documented that many users of this medication developed IBS/intestinal issues while or after using the medication.

Also, it perplexes me to think that probably every person in my family (immediate and extended) consumes dairy products and milk, but I am the sole one to develop Crohn's? I only consume grass-fed cultured butter now, and avoid milk altogether, but this makes me again question whether one particular bacteria is involved in the development of Crohn's. Butter is a pretty essential part of my diet because the short-chain fatty acids are more easily utilizable for quick energy, pose a lighter load on my digestive system as far as fat metabolism is concerned, and butter is known to have antimicrobial qualities due to the vast array of different short and medium chain fatty acids it contains.

Also, one study citing 92% of Crohn's sufferers had the bacterium, what of the other 8 percent? And what of the 26% of controls (without Crohn's) that had the bacterium but didn't have Crohn's?

What is the recommended treatment protocol for this if it were the problem? A specific anti-biotic?

 

[D Bergy]

It takes both an improper immune function and two bacteria. The first one being the Mycobacterium tuberculosis bacteria and the second being a certain strain of E-Coli that is difficult for the immune system to kill.

It is not a 100% conclusion, but by following this line of reasoning, I did manage to eliminate my symptoms.

I do not know what antibiotic would kill all of these bacteria without wiping out all of the rest.

I used Chlorine Dioxide which is supposed to kill only acidic bacteria. This is an experiemental treatment but the bacteria killing properties of Chlorine Dioxide are well known and established in many other applications. The product I used has the unfortunate name of Miracle Mineral Supplement.

It took six weeks of use to get rid of my last nagging symptom of sensations in my Terminal Ilium. Once I did get rid of it, I have not had it again.

After that I went on LDN to correct the immune response. I still take the Chlorine Dioxide once a week, but I am going to take it less often in the future to see if I can do without it. It is a powerful chemical, and I do not like using it more than I have to.

I am sure that there are other ways to inflame the intestinal tract, but unless the irritant remains there permanently, it should heal on its own. Accutane may bring on the IBS, but unless they have identified the mechanism, who knows what the underlying cause is?

From my experience involving faulty lab testing and bacteria, it would not be unusual to miss bacteria even though you are looking for it. My wife has been tested for lyme disease three times and never tested positive, yet she has the disease. Some people may only require the certain strain of E-Coli without any Mycobacterium Tuberculosis. There may be other opportunistic bacteria that add to the problem.

I just decided to kill them all.


Dan

 

[Jeff D.]

Hey Dan, thats the spirit. When you can't kill one thing just kill them all.lol

Sorry I'm a bit loopy I think I need to go to bed.

 

[Kev]

Well, I think theres sufficient evidence to merit folks being cautious around milk consumption. Tho there is still some debate over MAP, the numbers of it showing up in crohnies does give one food for thought, and good reason to adopt a better safe than sorry approach. As to why one has it, yet another doesn't, though both consumed milk from the same source; I believe the answer is genetic disposition. I don't know if MAP AND genetics are the only way one can get this disease; but the sheer incidence of both implies a BIG link.