Crohn's Disease

[KimC]

Hi,

Has anyone heard of a correlation between inflammatory bowel and valve disease or cardiomyopathy? I'm curious.

My GI doc suspected I had Crohn's, ran some tests including the new capsule endoscopy and confirmed the diagnosis although I'm having a hard time believing it. He thinks the autoimmune disorder is systemic. My cardio wants to wait and see how I do on mesamaline before taking immunosupressive drugs. (I'm prone to bronchitis).

Any info on Crohn's, autoimmune disorders, etc. would be greatly appreciated.

Thanks,

 

[Tom F.]

There is a doctor in England, Dr. Alan Ebringer, that research the connection between diet and a specific form of spinal arthritis. He found a link between high starch diet and bacterial infection, and has documented success in treating this arthritis by the adoption of a low or no starch diet. Search his name in google and you will get a lot of hits. You can also go to a website called KickASS.org. and read a lot.

Towards the end of his career he began to look into the application of this diet to both Crohn's disease, and rheumatory arthritis. Apparently he found that the law starch diet helped there as well, but retired before he really got into the subject. Crohn's is discussed from time to time at KickASS.org, so you may find some help there.

Although the alternative medical community has linked diet with arthritis disease in the past, Dr. Ebringer is no "alternative" researcher. He is mainstream, and he did his research very well, and he is very well respected. His work casts a new light on spinal arthritis, and may also impact Crohn's.

 

[geebee]

Well, I do not know about Crohn's (although I do have IBS) but, I do have fibromyalgia and RLS which are considered autoimmune issues. One of the known causes of both of these is the trauma from major surgery. I would think if trauma can trigger one type of autoimmune disease, it can trigger others.

 

[strawberry]

Like Gina, a lot of people with one autoimmune disease have others. I have a friend with Interstitial Cystitis which some think is autoimmune, and fibro and sjogrens all at once. I've heard that Grave's disease, which I have and is autoimmune, is linked to mitral valve disease. I hope you get a good treatment and feel better.

 

[KimC]

Thanks, everyone. Um, Tom? KickASS is a gamers Web site ... s'up?

 

[Tom F.]

http://www.kickas.org/

Some day I will learn to spell really I will ! Try this!

 

[Kathleen]

Crohns also

Crohns also

Kim
I was diagnosed with Crohns in January after it flared up and I was hospitalized since they originally suspected a clot in the ileum. Did the colonoscopy and then the endocam. What area did they find it in? We chose not to medicate at this time since once it rears its ugly head (which it will) we will talk about it them. I did get in touch with a woman who has had Crohns for many years and has taken the entire spectrum of meds and has many complications. She has been an absolute store house of information and can really discuss Crohns well. If you are interested I could link you up with her. How are you doing with the diagnosis. I had a difficult time dealing with it after all the years of heart issues. Now that a bit has passed I am accepting and not quite as angry. Must be the spring weather also.
Kathy

 

[hensylee]

Hi,

Has anyone heard of a correlation between inflammatory bowel and valve disease or cardiomyopathy? I'm curious.

That's just weird, isn't it? Not saying it isn't true, just a surprise.

 

[tobagotwo]

Kim, you might want to ask your GI if it would be all right to take some probiotics. He may feel it's not going to help at all, but he might be okay with you taking them anyway.

I believe that antibiotics play a role in intestinal problems for many OHS patients, and even in people with valve problems who haven't had surgery yet. Certainly not all people, and quite possibly not you, but many. Who knows how these things get started? The GI docs don't. Maybe bad bacteria cause damage so severe that it becomes permanent.

Those preventative doses of antibiotics we take for dentists and a variety of other invasive procedures kill off large colonies of the helpful bacteria in our stomachs (many more than they interrupt in the bloodstream) and allow other bacteria (like the evil helicobacter pylorus) to colonize. The traditional advice to eat yogurt is like throwing a glass of water at a prairie fire. At best, yogurt has two or three bacteria cultures in low doses.

I developed horrible pain after a series of dental visits last year, yogurt and all. I could only sleep for a couple of hours at a time, because the pain was so intense it would wake me up. I eventually found that I had developed a lactose intolerance. This was shocking, as I have been a dairy hound for over 50 years. Fortunately, a tablet of lactase whenever I ate dairy got rid of the worst of the pain.

I also developed classic symptoms of acid reflux, which I had never had before.

I started taking probiotics to help the good guys outcolonize the bad guys. I figured it wouldn't hurt, and might help. It took some time, but it reduced the rest of the pain. Better yet, after a few weeks, I was able to eat dairy products again without writhing in agony - no lactase required anymore.

The reflux still exists, but it is becoming much less frequent. I'm off the Prilosec and the rantidine. I'm down to a couple of antacid tablets every couple of days (mostly at night, if I eat too late before bed).

I'm not going to say this is a cure, but it tells me that the problems I have been dealing with are plainly tied to loss of internal flora and probably to having bad bacteria colonize in their place as well.

My suggestion for valve patients is to buy some probiotic capsules that contain eight or ten varieties of beneficial bacteria, and use them for at least a few days (preferably a few weeks) after any preventative antibiotics. If you want to, you can take the probiotic with yogurt.


Best wishes,

 

[joanne6]

I have read about mitral valve prolapse being part of autoimmune disorders. I have fibromyalgia and had mitral valve repair.

 

[tommy]

My Crohn's is in the ileum wall and considered mild. 1 gram Pentassa 4x per day has worked very well.

Neither my GE or cardio has ever mentioned a possible link between valve disease and Crohn's. My GE refused to do the capsule endoscopy because there have been no clinical tests with mechanical valves and the transmitter/receiver. The colonoscopy has to be aggressive to get into the ileum.

There are a lot of reports and books about diet and Crohn's. My GE says that none of it is conclusive. He told me that stress was more of a factor than diet, so go home and "fuhgetaboutit". Hmmmm, same Rx for my PVCs.

Crohn's most often shows us in early years. Adult onset is not rare, but less prevalent. I probably had it for some time and didn't recognize the symptoms.

It's important to keep IBS under control to avoid surgery or put it off as long as possible, especially for us Coumadin users.

 

[tobagotwo]

No offense Tommy, But why on earth would your GE think that a radio transmitter could in any way affect the operation of your mechanical valve? It has no electronics. It has no more potential to be affected by radio waves than your kitchen faucet. Maybe less, considering some of the faucets they make these days. Does he also fear for your life every time you answer your cell phone?

Consider writing a note to the manufacturer of your valve, very briefly explaining the dilemma, and asking if the PillCam could in any way affect the operation of your valve. It can't. Ridiculous.

Best wishes,

 

[tommy]

Bob, no offense taken. I respect this guy immensely. He is tops in the area and the go-to guy for the other GE's. I pushed back at the time based on the logic you mention. He contacted St Jude's and decided that without clinical documentation not to proceed. Instead, he did a scope from both ends and is now satisfied that the pill cam isn't necessary anyway. It's a battle I choose not to fight. My Dx is clear and the treatment is successful.

 

[KimC]

THANK YOU -- lots of valuable info and enjoyable banter.

Bob, a friend recommended priobiotics, too. I?ll ask my GI doc. This all flared up over the past few years, (I've been on heavy antibiotics on-and-off for bronchitis).

Tommy, the capsule study is a spooky experience but I wonder how it could affect valvers? I could see the camera flashing inside. (I'm pretty thin). You do have to wear coordinating space gear -- several nodes and a monitor reminiscent of a Holter.

Kathy, thank you. I was depressed for a day or two but then got over it. I?ve decided not to think about it. I don?t want the disease to become me, if you know what I mean.

Hensylee, I contacted my cardio re: any link between the GI disease and heart. He didn't jump to any conclusions but said "let's wait-and-see" how I do on mesamaline. I've heard heart dysfunction is a systemic disorder, so maybe this is all a part of it. Or not.

Blessings,

 

[tommy]

Pentassa is the brand name for mesalamine. Hope it works as well for you as it does for me.

 

[The Bionic Duo]

antibiodics and your digestive system

antibiodics and your digestive system

I'm with tobagotw on this one.

I have had a VERY controllable IBS for many years, but since I have had two knee's replaced I've had to do the antibiotic routine everytime I go to the dentist. My ortho Dr doesn't just go for the four pills before a dental appt, but a full scale 5 days of antibiotics (2 days before, the day of the appt, and two days after). My dentist wants to see me every three months--well the last thee appts have just about wiped me out--its takes me a week or better to get my IBS back under control. I discussed this with my PCP and she said that it was probably overkill, but to continue, take the probiotics, immodium D, yogurt etc with it. Well the dental appt I had about three weeks ago really did me in in spite of everything (I did not take the probiotics, but tried to keep some yogurt in me, and did land up taking some immodium) and was just not settling down. When I started to have some unusual bleeding after what I thought was an extreamly vicious IBS attack I went to my PCP. I saw one of her associates who immediately lined me up with a gastro DR. He did not see me but scheduled me for a colonoscopy for the next day (oh was that fun). What they found was an Ischemic Colitis, and put me on some VERY strong antibiotics for ten days.

Well I have just finished that ten day cycle yesterday, and I must say I didn't realize the pain I was in. I think those repeated antibiotic treatments left my colon without any of the good bacteria, and plenty of the bad. I'm now starting a new regime of fiber supplements and probiotics, and will take them every day, and I think I'm going to put off my next dental appt for a few months!!!

Joan

 

[Christina]

The Maker's Diet for Crohn's disease.

The Maker's Diet for Crohn's disease.

Hi Kim,

Please read how Dr. Jordan Rubin healed himself from Crohn's disease.
See below. I copied & pasted it for you. The website is below the story.

Jordan S. Rubin, MD. Florida
?The Maker?s Diet Saved My Life!?
A Shocking Discovery

In 1994 at 19 years of age and six foot one inch tall, my weight plummeted from 180 pounds to a shocking 104 pounds in a matter of months. As my immune system began to break down, I suffered from a list of debilitating conditions, including intestinal parasites, abdominal pain, chronic diarrhea, liver problems, chronic fatigue, fibromyalgia, arthritis, prostate and bladder infections, irregular heartbeat, eye inflammation, and chronic depression.

I was diagnosed with Crohn's disease. Though I was not familiar with the disease, I soon learned that my future looked bleak. I was told that medications would keep me alive, but I quickly discovered that their side effects were nearly as bad as the disease itself. And then, it turned out, the medications weren?t that effective. I continued to waste away. Science knew of no cause or cure for Crohn?s at the time, and my prognosis was very poor.

A Search for Answers

After both conventional and alternative medicines failed me ? and after 70 health professionals in seven countries put me through more than 500 different (and often bizarre) treatments ? I was sent home in a wheelchair to die.

Overcoming an Incurable Disease

My world changed when my father contacted an eccentric nutritionist who said he believed I was ill because I was not eating the diet of the Bible.

I integrated the nutritionist?s program with my own findings about nutrition and health from the Bible, and for the first time in my long battle, I saw some improvement in my health.

I believe my survival is a true testament to the power of my faith in God and the revolutionary health program I call The Maker's Diet. In the seven years since my recovery, I have not shown any symptoms of the disease that nearly took my life.

Go to: http://www.makersdiet.com/public/default.aspx

Good luck,

 

[Nancy]

Kim-

They were going to do the capsule endoscopy on Joe for some upper GI bleeding. However they cancelled it because the argon plasma coagulation procedure they did on his stomach worked. He had areas of bleeding gastritis.

I so wanted to see if I could see the light on the camera. Now you've answered my question. Joe's thin too, so it would have been interesting to see.

 

[KimC]

Interesting, very interesting ... I brought up ischemic colitis with my GI doc and he shook his head. But I wonder. I didn't have colitis a few years ago, and my BP has been very low lately: 80/60 at my last cardio appt. I may bring it up again with him after the diagnosis.

Christina, I'll look into the Maker's diet -- love the name!

Nancy, I had the test the same day it was touted on Good Morning AM. I gave the other patients in the waiting room a laugh -- I looked like a space alien wearing it!

Thanks everyone.

Warm regards,

 

[The Bionic Duo]

interesting indeed

interesting indeed

Kim

The gastro told me he thought my problem was Ischemic Colitis BEFORE he did the colonoscopy!! The biopsy they did confirmed it. What I find interesting too is that you have low BP, occording to what I found out about Ischemic Colitis it is listed as one of the causes. Since I have hypertension that has been under control with meds and diet for a long time I don't think it had anything to do with my outbreak of Ischemic Colitis. Although I will probably never know what my trigger was, I suspect it was an adverse reaction (racing heart beat, and difficulty breathing) to a drug my urologist was trying out for a bladder problem.

Good luck and I hope you can get this thing under control soon.

Joan