Crohn's/UC/MAP bacteria/mycoplasma HELP!!!!!!

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Jan 5, 2006.

  1. MamaDove

    MamaDove New Member

    Hi everyone~

    Just got back from my follow-up on my newly diagnosed Crohn's findings from my colonoscopy on 12/21...Been fighting Ulcerative Colitis since 1995, on Asacol on and off and never had a 'flare' like this...I thought I was dying, really! I still feel BAD but I have been on prednisone 40mg in am and Cipro 250mg 2x day, ending yesterday...

    So I see my gastro, he is exhausted, in scrubs from just coming out of surgery and he knows I have questions...Within minutes, he is grabbing his head saying I am going too fast for him and I am asking way too many questions...CAN YOU BELIEVE IT????

    He tells me due to the extent of the disease and that I have not fully stopped bleeding nor has the inflammation in my abdomen gone down like it should after two weeks, he wants to adnit me and do IV steroids along with antibiotics and Azathioprine (Imuran)...If the side effects appear, he can deal with them immediately OR if it's not benefitting enough, he could start REMICADE (at $2,000 a dose!)

    My husband questions him...Why does my wife have this? What caused it? Why after 10 years she is worse? He SNAPS back, "your wife does not deserve this, she did nothing to cause this, it just happens, it's like diabetes, it just happens"...My husband SNAPS back, diabetes CAN be avoided by proper diet and is not auto-immune like UC/Crohn's...My wife doesn't have diabetes, she has Crohn's...No known cause, no known cure!!! But yet you feel the need to treat her symptoms instead of finding out the reason for the symptoms...SUCH AS MAP BACTERIA, to name one cause...

    He hesitated before responding "that's an UNPROVEN theory, MAP bacteria is thought to be the cause but they can't prove that, therefore it's not considered in your case"...

    I asked him why I wasn't tested for bacteria during this colonoscopy but was in 1995, no response...
    I asked him to request a test for all bacterias including MAP, he replied, "we don't test for MAP in the US"...I asked him again to request a special test for me to put my mind at ease because if in fact it is MAP, I would prefer to use the anti-mycobacterial drug therapies to get the bacteria INSTEAD of using steroids to stop the inflammation and the anti-biotics to stop the infection...Remember, two weeks later they are not working!

    After 1 hour of a battle of the wills, I retreated with saying this much, I am not going to be admitted, I need to know if it is MAP bacteria or another bacteria and I will begin Azathioprine tomorrow, because that drug is considered a 'disease modifying anti-rheumatic drug', just what I could benefit from...It works by suppressing immune system activity...

    I told the doc I researched this drug and was going to ask him to prescribe it cause it fits my needs to a TEE... FMS being a rheumatic condition, UC being auto-immune along with FMS, seems like a may have found a winner...He did not however, have the explanation of what class the drug was nor what it was designed to do...I had it written in my notes, he kept coming around and looking at what I had written down and repeating it...

    I also asked him if he never isolated MAP bacteria, then has he ever used anti-mycobacterial drug therapies for UC/Crohn's remission...He said "NO"...

    When we were all done I ended up with a script for Azathioprine, a stool culture lab slip (without the MAP of course) tests for liver and cbc to make sure I am okay for these drugs therapies and a comment on how he would look into the anti-mycobacterial drug therapy for me...

    Interesting huh?!

    Wanted to pass this experience along just so others may benefit from it as well as ask if anyone knows how I can get tested for MAP bacteria...I have a gut feeling that this is my problem...I only have bowel problems when I live in Maine, I was diagnosed here, moved away and was fine, I come back and here we go again...This is a dairy providing/consuming state and believe you me I was consuming quite a bit just prior to this flare...

    I would rather get to the bottom of this and fix it if it means FIXING my diet and curing this disease...

    Any replies would be welcome and esp any info on where to get MAP bacteria info from, my hubby thinks we are onto something and they are hiding something...Nothing new!!!

    Thanks for reading everyone...I have been so darn sick but trying to go on like only we do/can until I find the answers...Remember, I am sick enough to admit to the hospital but not to test for a bacteria that could be causing me to be this sick...Somethings wrong here...

    Have a nice peaceful night, I am going to try and sleep and my hubby is helping me start this new battle to find a cure for me tomorrow morning...Wish US luck...

    PS, My hubby got a taste of what we go through with these dd's...I have kept this from him cause of the stress it causes and he has epilepsy so I can't put this on him (that's why I won't go into the hospital, noone to watch him)but he is now convinced I am being 'bulldozed'...I told him, together we can conquer anything, 20 years of marriage proves that...So here we go!
  2. lovethesun

    lovethesun New Member

    for mamadove
  3. Dee50

    Dee50 New Member

    I'm so sorry this is such an up hill battle. Prayers for you to get answers soon.

    Hope someone on the board can help you with getting the MAP test you need.
    Take care,
  4. Prunella

    Prunella New Member

    A good book to read is The Maker's Diet by Jordan Rubin. He healed his Crohn's through diet. He has lots of good advice, but I would not go as far as drinking raw goats milk as he advises.

    He avoids all meds and like I said, has lots of good advice. He does sell some products like Primal Defense, but his book is all about how he got well. Doctors were not helping him. In fact they were making him worse. He did it all on his own.

    You can Google him. He has his own website. But I highly recommend getting the book. It will be worth every penny. You will relate to a lot of what he says. Please get the book before you take any more meds!
  5. Prunella

    Prunella New Member

    Another good book is Listen to Your Gut by Jini Patel Thompson. She also used natural methods to heal herself of Crohn's.
  6. MamaDove

    MamaDove New Member

    BUMP Bump Bump
  7. fairydust39

    fairydust39 New Member

    I had UC for 30 years and dairy products are a NO NO !
    After I took Minocycline for a 6 months and then did a complete Colon cleanse,I don't have UC anymore. I haven't taken any drugs for it for 2 years.Almost everyone that has a bowel disease is constipated. Now I know you have diarrhea but what most don't understand is when you have diarrhea you are really constipated. The reason is that your colon has an opening as big as a pencil--it should be at leat 3 or 4 " opening. So your body is trying to get rid of the plaque on the colon walls by causing you diarrhea. Now I know no Dr will tell you that b/c they don't believe it. But I do know that by Gods grace and the colon cleanse, I do not have UC anymore.I do get polyps and have to have them removed and yearly scopes . My Dr said "Once you have Uc --you always have UC" I told him that's not true b/c I don't have it anymore and take no drugs. I took enough Pred. to cause cataract on one eye and thinning of my bones,which caused arthritis. Don't take Pred. unless you just have to.
  8. MamaDove

    MamaDove New Member

    for telling me of your experience...

    Docs never seem to mention anything regaridng diet such as dairy, etc...But they can't keep quiet with what new drugs are out there that you just HAVE TO TRY...

    Suffering on and off for 10 years with UC I have learned a great deal...I know that seeds bother me and certain veggies and of course now dairy PLUS all the garbage that they put in everything else, I have tried to stay away from anything canned, processed and sugary baked goods and things we all know we shouldn't have...

    I have also gone against docs wishes and stopped my meds,Asacol, when I was in remission and have been successful for lengths at a time...Now, it seems the ASACOL causes me more problems than the benefit, none of which my doc ever heard of and has been fighting me everytime I tell him my complaints...He finally says "I believe your added problems are due to the asacol and I don't want you to take it anymore"...WOW, only took 10 years for him to come around...

    I will be asking him about minocycline and I recently did a colon cleanse but it never did seem to CLEAN me out, of course I must have something BAD in there that the cleanse just won't get so I guess a stronger anti-biotic and then the cleanse and watching my diet too...

    I am starting the azathioprine tonite and going to relax all weekend too...Got all my cleaning, laundry, boys groomed too, so I am off for a couple days...

    I will post again soon...Hope the new drug works quick and gets me on my way to some real answers here...

    Thanks everyone~Alicia

  9. razorqueen

    razorqueen Member

    my daughter is still waiting for the results of her biopsies for Crohns. Could it be you are lactose intolerant? People do go into remission with these IBD's, and then they come back. I bought that book by Jordan Rubin, and even tho I am using Primal Defense, it was a waste of money to buy that book. Most of that food cost a fortune and isn't available where you live so you hae to order it, and then he wants you to use his soap, laundry detergent and everything like that. He also operates under a pyramid system, making money big time off us sick people.
    You need to get onto a message board for CD/UC. healingwelldotcom is a really good one.
    Wish you well,
    as far as having a build up of poop on our intestinal walls, I don't buy that. I saw the pics of my daughter colonoscopy and her intestines where squeaky clean. No "build up" what so ever. The theory of most people who have diahrea are constipated sounds a little far off to me. JMO[This Message was Edited on 01/06/2006]
  10. MamaDove

    MamaDove New Member

    I have been thinking of Jerica and I can't understand why those biopsies aren't in yet...She had hers done same day as me...12/21...Mine were in on 12/23 and I live in the woods where they are slower than molasses...

    The doc still considers this Crohn's and is treating it as such however, the biopsies read 'active chronic colitis'. So who the heck knows...What I do know is that I don't have diarrhea, I am not constipated and my only symptoms are swelling and bloody mucous and pus ONLY when I go...Doc looked confused when I told him that yesterday...GEEZ, you would think since we diagnose 20,000 new people a year with IBD PLUS all the millions that have had it, they would now something other than take this pill, take that pill...

    I am leaning toward MAP bacteria as being the cause of mine and if I can wipe out the bacteria I SWEAR no more milk for me...I guess that's why it's so hush hush, would take BIG money out of milk companies pockets...

    My Daddy was a milkman and a forman at his plant and may I say that the milk we drink today tastes nothing like I had from my Dad's plant...Funny, my Dad wouldn't drink milk after he retired with severe RA at age 39, I think he knew what was in it...tehe

    Boy, I wish my parents were here to help me with all these dd's...They would be heartbroken to see me as I am today...Maybe it was a blessing in disguise that I lost them when I was so young, they didn't have to go through this crap watching their daughter suffer like this...But I don't stop thinking how I would be much better if they were here...I miss my Mommy and Daddy... :(((((((((

    Keep us posted on Jerica please, I bet many of them are waiting to hear like me...PS. Thanks for the tip on the book, that's all I need is another $35.00 dust collector...Have looked up alot online tho, just as much, if not more info there...PLus, my other dd's don't afford me the luxury of being able to read a book...
  11. Prunella

    Prunella New Member

    Just thought I'd mention that you don't have to buy any products mentioned in the book (The Maker's Diet). I haven't bought a thing. I read the book cover to cover and still feel that he gives lots of good advice and lets you know of lots of self-help things you can do to get well. I am very impressed with the book and would recommend it to anyone. He spends a lot of time talking about gut health in general. He recommends buying organic meat and I totally agree with that. I make a chicken soup similar to what he recommends.

    The products listed in the back of the book are not products you "should" buy and most of them are not even from his company. He just compiled a list of products that might be helpful for people. Most can be found at health food grocery stores.

    He gives lots of dietary and lifestyle advice. I stopped eating pork and shellfish as he recommends. He recommends coconut oil and lots of other things that have been mentioned on this board. It is nice to have it all in one place. I don't agree with every single thing he says, like raw milk, but he's got tons of good advice in his book from someone who's been there. Just my humble opinion.
  12. fairydust39

    fairydust39 New Member

    Well I can't speak for everyone but when I did my Colon Cleanse,I passed some awful stuff,won't go into details but

    I know that I had diarrhea,hemorrhaging, and constipation off and on for 30 years. When you take Asacol it stops the bowel from moving,which stops (the Diarrhea,Hemorrhaging),that's why you take it in the 1st place.So after a while you have a build up of rotten fececs,stuck like scabs on the colon walls.

    As far as the Colonoscopy,they NEVER told me I had a buildup of feces in my colon. I had dozens of colonoscopies over a 30 year period ! I lost 14 pounds doing the cleanse.

    Most people don't stay on it long enough for it to help. If I started bleeding or too much pain,I backed off for a while and then started again until I was sure that I got it all.
    After all was done it was like turning a light switch on,b/c I was better almost instantly.I don't take anything for UC anymore. I know when I had UC ,if I missed one pill --I'd be bleeding.

    It's been 2 years now without any meds.
    I know it saved my LIFE b/c I was bleeding to death,I sometimes got 7 pints of blood at a time.My blood count was 4 at times in the 30 years and lots of hospital stays too!

    I wonder Mommadove if you even have UC b/c that always has Hemorrhaging and Diarrhea. I have met hundreds of people with UC,Crohns and they all had those symptoms!
    Hugs Shirley
  13. Dee33K

    Dee33K New Member

    I agree, Prunella,

    I am also taking the Priamal Defense as the previous person stated that decided the book was a "waste of money" but yet is taking his product, "Primal Defense". In fact, I wouldn't be without it!

    It turned my whole system around! If you pull up the product sheet about it and read about it (it is a probiotic) it will explain to you how it helps you break down the food you eat. I realized that I was not absorbing my food properly. I have Fibro. It has really helped me a lot. Just my 2 cents.

  14. MamaDove

    MamaDove New Member

    He smiled at me and said "Where are you getting this information from?"..."Oh, the internet"...

    I should have belted him right there...

    Okay, everyone has some experience with this "crap" and I think the suggestions are right on...

    I need to be tested for mineral absorption cause we all know that if your bowel does not work properly, you will be ill!!! Tada, I am ill...

    Someone (fairydust?) questioned whether I had UC or not...I can only go by the biposies...9 of them, 6 showed active chronic colitis, no dysplasia...Then the doc feels because of what he saw, it's Crohn's colitis...A play on words? Seems to me...

    I am at their mercy in that respect and I did question him as to the severity of my symptoms versus the disease activity...But as we all know, we are quite tolerable to pain, even severe, and I know I was sicker than usual, I described it as "dying"...

    The doc had fear in his eyes when we went over my symtpoms and he realized the drugs he put me on didn't fully work YET. That's why I have so many questions...???
    He has done over 9,000 colonoscopies, treated how many with this problem and his recommendations did not CURE ME in 2 weeks like it should have...

    THAT IS WHY I AM QUESTIONING THE DIAGNOSIS AND TREATMENT DOC! I think it's bacteria that is resistant to the Cipro and the steroids are useless in fighting that so it's still there...Does it take a genius to figure that out?????

    I am going with my gut on this one folks...Thanks so much for all your input, I appreciate you all taking the time to help me!!!

    Peaceful and enjoyable days to all~Alicia
  15. razorqueen

    razorqueen Member

    are very individual diseases. What works for one might not work for another. You can't treat each person the same. It can take some time to find the right combo of meds. You can have a combo of crohns/colitis as well. Did he say where your crohns is? It can affect your anus up to your esaphagus. Some even get it on their lips! I've seen the pics on the net. Nasty.
    It definetly is a hard row to hoe! You can bleed with CD and UC. Jerica doesn't have D either, but some blood on her stool, which I think is coming from the ulcers they found during her colonoscopy. Their are people with CD that don't have D.
    check out that website I told you about. There are threads on there about MAP as well.

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