Are there any GI doctors on this board? I had a few questions about Crohn's disease. Or if anyone has Crohn's disease or any experience with it, feel free to chime in. And no, I'm not looking for free medical advice. Just more of an explanation about what it is exactly. Thanks in advance.
GI Doctors
- Thread starter White92
- Start date
I knew a person who had Crohn's disease. He was on medications and did have occasional hospitalization, but for the most part led a normal life. Here is some literature I found on the disease.
Crohn's disease is a lifelong condition characterized by inflammation and ulceration of the gastrointestinal tract due to an abnormal immune response. Symptoms include persistent diarrhea, painful abdominal cramps, fever, and occasional rectal bleeding. Common complications include deep ulcers called fistulas and malnutrition due to poor absorption of nutrients. Crohn's disease most commonly affects adolescents, young adults, and people over 60 years, and tends to run in families. The causes of Crohn's disease are unclear, but researchers believe it is caused by an interaction of genetic and environmental factors.
Though Crohn's disease does not have a cure yet, medical professionals work closely with patients to both manage symptoms as well as treat complications. Four types of drugs are used to help control symptoms: antibiotics, anti-inflammatories, corticosteroids, and immune modifiers. During flare-ups, soft, bland foods may help minimize or prevent discomfort. While surgery does not cure the disease, removal of damaged portions of the intestine may be performed to provide additional relief if medications are no longer effective.
Although Crohn's disease requires a specialist's close supervision, as well as periodic hospitalizations, most people with Crohn's lead full, active lives. Researchers continue to seek ways to improve the health of those with this disease; recent research and info about support groups can be found at the Crohn's and Colitis Foundation of America web site.
Crohn's disease is a lifelong condition characterized by inflammation and ulceration of the gastrointestinal tract due to an abnormal immune response. Symptoms include persistent diarrhea, painful abdominal cramps, fever, and occasional rectal bleeding. Common complications include deep ulcers called fistulas and malnutrition due to poor absorption of nutrients. Crohn's disease most commonly affects adolescents, young adults, and people over 60 years, and tends to run in families. The causes of Crohn's disease are unclear, but researchers believe it is caused by an interaction of genetic and environmental factors.
Though Crohn's disease does not have a cure yet, medical professionals work closely with patients to both manage symptoms as well as treat complications. Four types of drugs are used to help control symptoms: antibiotics, anti-inflammatories, corticosteroids, and immune modifiers. During flare-ups, soft, bland foods may help minimize or prevent discomfort. While surgery does not cure the disease, removal of damaged portions of the intestine may be performed to provide additional relief if medications are no longer effective.
Although Crohn's disease requires a specialist's close supervision, as well as periodic hospitalizations, most people with Crohn's lead full, active lives. Researchers continue to seek ways to improve the health of those with this disease; recent research and info about support groups can be found at the Crohn's and Colitis Foundation of America web site.
Do you or the person with Crohns live near Salt Lake City?
Thanks for the info TucAZNSX. I actually have that stuff. I'm sorry, I should have been more clear in my post. I just wasn't sure how to ask it, but basically I'm trying to find out how to explain to people in basic terms exactly what it is and how it affects people who have it.
And nuccaJB, yes. I'm in Salt Lake and I'm the one who has it. I was diagnose about 9 years ago. I don't really ever talk about it, but when I do, it's hard to explain to anyone. When you start talking about fistures and what-not it gets a little awkward. Even my wife of 4 years doesn't quite get it. :smile:
And nuccaJB, yes. I'm in Salt Lake and I'm the one who has it. I was diagnose about 9 years ago. I don't really ever talk about it, but when I do, it's hard to explain to anyone. When you start talking about fistures and what-not it gets a little awkward. Even my wife of 4 years doesn't quite get it. :smile:
Just tell them that your body has decided to beat up on your intestines much like someone who has rheumatoid arthritis whose body beats up on their joints. Something triggered the body to think its own tissue is foreign, and that reaction can be controlled with diet and drugs, but not turned off.
Good luck. This can be a very frustrating condition, not the least from the standpoint you have mentioned above - lack of general understanding among lay people.
Good luck. This can be a very frustrating condition, not the least from the standpoint you have mentioned above - lack of general understanding among lay people.
I am an internist and do take care of people with Crohn's which is an Inflammatory Bowel Disease. In simple terms, you can tell people that your intestines have chronic recurrent inflammations causing diarrhea, pain, and other complications.
Steve
Steve
Crohn's must suck. I have IBS and an Ulcer and they drive me nuts.
White, sorry to hear that you are dealing with Crohn's. You are not alone here, and I know what you are going through. I was diagnosed fifteen years ago with Ulcerative Colitis, which is very similar to Crohn's AFAIK. One of the reasons that I decided on a vegetarian diet.
Thanks guys. While it does suck, I do lead a pretty normal life. I'm lucky I haven't had to be admitted to the hospital yet. A guy a know who is 50 years old was diagnosed about the same time I was. They can't get his under control though. Even with every known drug out there including massive doses of prednisone and 2 surgeries.
I feel very lucky. I've had a few pretty bad flare ups though. When I was first diagnosed nobody could figure out what was wrong with me. I'm 6'4" and was down to 131 pounds. Not to be too gross, but I almost literally could have eaten everything sitting on the toilet. All of the doctors I went to accused me of being on drugs and if I wasn't they didn't know what it was. I finally went to a GI doctor and he almost immediately knew what it was. He got me on some pretty doses of Prednisone and other meds and I did really well. That Prednisone is some nasty stuff with some crazy side effects, but it's also a life saver.
At one point a couple of years ago I had a flare up. The doctor did a test where they stick a tube down your nose and goes straight into your intestinse. Then they pump a bunch of barium into it and take several x-rays as it flows through everything. When the results were in, a part of my intestines, which are supposed to be 2 finger-widths wide inside, as about the size of a mouse cord because it was so inflamed and swollen. I was put on more prednisone again. A side effect of it is that you retain alot of water. I wear contacts and had just gotten a new prescription. But when I started the Prednisone I couldn't see with them in anymore. Nobody knew what the deal was and they finally narrowed it down to the Prednisone making me retain water in my eye-ball and reshaping it. I was 20/400 then, with my new contacts in. Kind of scary.
Right now I'm on a really good medication called Imuran or the generic is Azathioprine. It's worked well, but really stunts my immune system and I get sick more often than I'd like. Everytime I get the prescription filled at the pharmacy, I get a crazy look from the pharmacist because they never see this medication or see it in doses this high. So they have to call my doctor before giving it to me to make sure it's not a mistake. From what I understand, it's normally given at hospitals to kidney transplant patients and the like to stunt their immune system so their body does not see the new tissue as foreign and reject it.
There is a newer medication out there called Remicaid that is supposed to be really good. It's administered through a slow IV drip. My doctor said that for insurance to pay for it, you have to be in pretty bad shape and almost needing surgery. And you want insurance to pay for it because it's about $3k per time and you usually get it about once every 3 weeks I believe. Don't quote me on that though. Luckily I haven't been quite that bad. :smile:
I just hate explaining it to the "lay" person as described by someone above. It's hard to do without getting to graphic or gross, plus the topic usually comes up at dinner when I pass on the salads and stuff. Lettuce is the worst for me. So I usually just avoid it and say I don't like salad. Anyway, that's my story. Thanks again for the info and letting me ramble on.
I feel very lucky. I've had a few pretty bad flare ups though. When I was first diagnosed nobody could figure out what was wrong with me. I'm 6'4" and was down to 131 pounds. Not to be too gross, but I almost literally could have eaten everything sitting on the toilet. All of the doctors I went to accused me of being on drugs and if I wasn't they didn't know what it was. I finally went to a GI doctor and he almost immediately knew what it was. He got me on some pretty doses of Prednisone and other meds and I did really well. That Prednisone is some nasty stuff with some crazy side effects, but it's also a life saver.
At one point a couple of years ago I had a flare up. The doctor did a test where they stick a tube down your nose and goes straight into your intestinse. Then they pump a bunch of barium into it and take several x-rays as it flows through everything. When the results were in, a part of my intestines, which are supposed to be 2 finger-widths wide inside, as about the size of a mouse cord because it was so inflamed and swollen. I was put on more prednisone again. A side effect of it is that you retain alot of water. I wear contacts and had just gotten a new prescription. But when I started the Prednisone I couldn't see with them in anymore. Nobody knew what the deal was and they finally narrowed it down to the Prednisone making me retain water in my eye-ball and reshaping it. I was 20/400 then, with my new contacts in. Kind of scary.
Right now I'm on a really good medication called Imuran or the generic is Azathioprine. It's worked well, but really stunts my immune system and I get sick more often than I'd like. Everytime I get the prescription filled at the pharmacy, I get a crazy look from the pharmacist because they never see this medication or see it in doses this high. So they have to call my doctor before giving it to me to make sure it's not a mistake. From what I understand, it's normally given at hospitals to kidney transplant patients and the like to stunt their immune system so their body does not see the new tissue as foreign and reject it.
There is a newer medication out there called Remicaid that is supposed to be really good. It's administered through a slow IV drip. My doctor said that for insurance to pay for it, you have to be in pretty bad shape and almost needing surgery. And you want insurance to pay for it because it's about $3k per time and you usually get it about once every 3 weeks I believe. Don't quote me on that though. Luckily I haven't been quite that bad. :smile:
I just hate explaining it to the "lay" person as described by someone above. It's hard to do without getting to graphic or gross, plus the topic usually comes up at dinner when I pass on the salads and stuff. Lettuce is the worst for me. So I usually just avoid it and say I don't like salad. Anyway, that's my story. Thanks again for the info and letting me ramble on.
Have you ever tried supplementing your diet with a high-quality fish oil?
If not, it may be worth a try. 3 to 6 grams a day taken consistently can have a wonderful anti-inflammatory effect. It's not very expensive and will also deliver a bunch of other benefits(hair, skin, joints).
I take various essential fatty acid supplements daily including some fish oil.... 'Super EPA' by 'NOW' brand. My purpose is for an overall healthy diet, but also to help with a chronic sore knee courtesy of a lifetime of sports. I read a bunch of accounts by IBD and Chrohn's sufferers that were significantly helped by the addition of good fat supplements in their diet.
Only recommendation is to take the capsules at the beginning of meals. This will minimize fish burps :wink:
If not, it may be worth a try. 3 to 6 grams a day taken consistently can have a wonderful anti-inflammatory effect. It's not very expensive and will also deliver a bunch of other benefits(hair, skin, joints).
I take various essential fatty acid supplements daily including some fish oil.... 'Super EPA' by 'NOW' brand. My purpose is for an overall healthy diet, but also to help with a chronic sore knee courtesy of a lifetime of sports. I read a bunch of accounts by IBD and Chrohn's sufferers that were significantly helped by the addition of good fat supplements in their diet.
Only recommendation is to take the capsules at the beginning of meals. This will minimize fish burps :wink:
don't pig pinworms help? i saw a study somewhere...Sig said:
willabeest said:
I thought you were joking until I saw this:
Could Worms Be Good For You? (9/25/2004)
There is growing evidence that parasitic worms, or substances derived from them may be useful in treating autoimmune diseases. This so called worm therapy is still experimental, because it has not been tested with large double-blind trials. But promising results have been achieved with small human tests and this idea has been well documented with animal studies. The concept behind such treatment is consistent with an old theory known as the hygiene hypothesis: too much cleanliness may cause immune system diseases and that microbes have a role in calming the immune system. One of the first target diseases to be studied in human patients is a painful bowel disease called IBD. A gastroenterologist, Joel Weinstock from the University of Iowa is giving volunteers Gatorade drinks containing 2500 live eggs from parasitic worms in an attempt to treat IBD. Earlier mouse studies using eggs or extracts from a variety of parasites such as flukes, flatwarms, tapeworms, and pinworms were shown to reduce or prevent several autoimmune disorders including type 1 diabetes. One of the first parasites to be tested with humans are eggs from the pig whipworm, Trichuris suis, which does not fully develop in humans and should not have side effects. Small studies by Weinstock using live parasitic eggs have shown promising results for patients having ulcerative colitis, an inflammation of the large intestine that produces persistent diarrhea. Similar positive results have been achieved in a small study of patients having Chrohn's disease, another painful autoimmune disorder. A group of children in Gabon Africa who were treated with medications to kill their helminth parasite infections resulted in them developing allergies. There are substantial ethical problems using parasitic worms as a medical treatment, but the development of medicines to reduce serious autoimmune diseases could counterbalance these concerns.
No, I haven't tried fish oil yet. I have heard about it before though. Isn't it the Omega-3 fatty acids or something that are supposed to help? I may have to start trying that. If I could get decent salmon here, I would get that from eating salmon every chance I got. :smile:
I seriously doubt I will ever try the pig pinworms though. That's a little over the top for me, but thanks for the idea. :smile:
I seriously doubt I will ever try the pig pinworms though. That's a little over the top for me, but thanks for the idea. :smile:
White92 said:
A nice thing about fish oil capsules is that you can get certified pollutant/heavy metal free oil. Unfortunately, that is not the case with fish.
You are correct it is the good fatty acids that supply the benefits. Although, not all essential fatty acids ('efa's') are created equal. Other efa supplements with omega 3 content like Flax oil, while very good for you... work via an alternate pathway. Flax oil and many others must be metabolized to produce the bio-active efa's of EPA and DHA. They contain very small amounts of naturally, but the en vivo conversion provides the bulk of epa/dha from these oils. Your body will limit this conversion and regulate how much is produced. For most folks the conversion rate is high enough to supply adequate quatities of EPA/DHA. However, in people with chronic inflammatory conditions like arthiritis and other auto-immune issues... the conversion rate may not be high enough to make a big difference in the condition. That's where fish oil products are beautiful. They supply the 'finished products' epa/dha in much higher amounts than most other oils... thus allowing you to short circuit the conversion process and provide the ultra-active components immediately and at a trackable dosage.
Wow, that's some really good info Jason. Did you get that from a medical book or do you know all of this already? hehe I think I will start trying this out. Are there any negative side effects? What brand(s) do you recommend or use and where do you get it? Thanks again.
White92 said:
No medical books, but I did stay at Holiday Inn Express last night:smile: Back to serious, I have spent about 10 years researching diet related subject matter like food properties, food balance, supplements and the impact of various macro-nutrients on the body's systems. For whatever reason, it has always interested me. In addition, I'm the type of person who tries to focus on preventative stuff as opposed to treating symptoms whenever possible. It's truly amazing how many things can be controlled through diet!
The problem with most peoples' diets including my own to a certain degree are that they tend to be pro-inflammatory. The main contributors include things like excessive refined carbohydrates (most breads, white rice, sugars, high-fructose syrups), excessive animal fats, and all the partially-hydrogenated crap they put in food now. Animal fats are made up of mostly Omega-6 fatty acids. Omegas 6’s are necessary and provide some wonderful benefits to the body. However, if your body takes in mostly O-6's, the ratio of fats becomes unbalanced and favors an inflammatory state.
By cutting back on some of the bad stuff from above and injesting a more balanced fat profile (or supplementing with good fats), you can experience significant changes in your body's state. I'll list a few: aids in liver health, helps with depression, contributes to healthy skin/hair, reduces inflammation in joints, good for blood pressure, and supposedly increases mental clarity. I can attest to the joint and hair/skin benefits. My 'bad' knee is not nearly as temperamental as it once was, in the absence of moisturizer my skin doesn't dry out in the winter months anymore, and my hair grows quite fast these days. As to the other benefits, it's difficult for me to comment since I do not monitor those types of things.
You asked about side-effects, the only one I can think of is fish burps. As I said earlier this usually not an issue if you take the capsule(s) at the beginning of a meal.
This is what I get and where I get it from, looks like it's out of stock right now though:
http://www.dpsnutrition.net/product_information.asp?number=NO249&back=yes&dept=1130&last=1130
You can also try here:
http://www.1fast400.com/p544_Super_EPA_Now_Foods.html
Chrohns is no picnic.If you live with someone who has it or see it often as a physician then you know the problems.White I don't know exactly want you wanted to get from posting your condition on prime but it did stimulate some interresting posts. :smile: As a side note over the years I have seen less and less chrohns patients coming for barium studies,which may indicate the effectiveness of the newer immunosupresant agents.Left unchecked the repeated inflamation of the bowel can lead to fistula,which means that abnormal small channels open up between bowel loops or to the bladder,or even skin.These are a chore to take care of.I'm not a fan of repeated surgery to remove bowel loops but thankfuly our small bowel is pretty long.I have no magic info for you.I hope in the next 10 years we will learn enough about the autoimmune disorders to conquer chrohns,lupus,hashimotos,scleroderma,ms,ect,ect.As I tell all my patients with chronic ailments,look past your problems day to day and dwell on what you can and are able to do,and if you feel good,forget about it :smile:
Sig said:
I dont know if I completely believe this hypothesis. But I won't dismiss it.
I have brought up this on another thread.
http://www.nsxprime.com/forums/showthread.php?t=51356&highlight=allergy
Moderation and balance is the key in life.
I felt sorry for you White. I too have a life term disease and have to take medication everyday. I have Ankylosing Spondilytis that is the thinning of the cushioning tissues of the back bone. I had to take anti-inflammatory pills and pain killer. Other than that I led a pretty much normal life. Just have to learn to live with it. :smile:
Sig is pointing you in a good direction with the fish oil. My personal recommendation is Carlson's Cod liver oil. I use the straight oil andit comes in a lemon flavor so there is no fish taste. I don't get burps from it. This may help, but if it does not, it will help you inso many other ways it is good to stick with. I take 1-2 tablespoons per day.
The reason I was asking if you are in SLC is if you are open to trying alternative medicine check out Jack Stockwell. He has a radio show out there.
his website: http://www.drstockwell.com/default.asp
He is not a pop and chiro. He does an ultra specific adjusment called NUCCA that makes a bigger difference on the autonomic nervous system. This can drastically affect the GI tract. I know of one patient with ulcerative cholitis that is 100% better. I also have a lot of patients that their IBS and acid reflux is 100% gone when they are in alignment. It may sound crazy, but it is pretty solid on the results. I have one patient with Chrons and she is in her late 60's. She is not completely better, but she notes less flare ups when in alignment. She says anything that helps she wants. Hope this can help, I know that what you live with is not a good thing. Best of luck.
The reason I was asking if you are in SLC is if you are open to trying alternative medicine check out Jack Stockwell. He has a radio show out there.
his website: http://www.drstockwell.com/default.asp
He is not a pop and chiro. He does an ultra specific adjusment called NUCCA that makes a bigger difference on the autonomic nervous system. This can drastically affect the GI tract. I know of one patient with ulcerative cholitis that is 100% better. I also have a lot of patients that their IBS and acid reflux is 100% gone when they are in alignment. It may sound crazy, but it is pretty solid on the results. I have one patient with Chrons and she is in her late 60's. She is not completely better, but she notes less flare ups when in alignment. She says anything that helps she wants. Hope this can help, I know that what you live with is not a good thing. Best of luck.
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