I Have Crohn’s Disease And Am Having Too Many Flare Ups . . . Is There Anything Else I Can Do??
My Doctor is treating my condition aggressively but I still have been to too many ER’s to count and even have been admitted several times.
I’m tired of being in pain. Can anyone help me?
Comments (5)
I was diagnosed w/ Crohn’s when I was 17. I had the disease prbly for about 2 years undiagnosed. I ended up loosing about 30 pounds while waiting for them to diagnose me. I never wanted to leave the house because people either thought I was anorexic and using drugs. I would cry just at the thought of eating because I knew how much it was going to hurt. Finally after a colonoscopy, I was relieved to hear that they found out what I had. My GI doctor put me on steroids for a few weeks, pentasa and imuran. I then was receiving Remicaid treatments (Medication through IV) every other month and taking the pentasa (pill) every day. The medication starting helping, then after a few months I felt like a normal person again. Finally NO PAIN! Remicaid has HORRIBLE side effects and is something that took a while to convince me to start using. But my crohns is in remission as of now and I actually have been off ALL medication for 10 months now because I have recently had a baby boy. I have had flare ups every few weeks but it’s NOTHING compared to what I was experiencing before, just runnin to the bathroom. There is also another option that is similar to Remicaid it is called Humira. It’s like a little pen with a needle that pricks you and gives you your dose of medicine. I have not tried this yet, Humira has the same side effects as Remicaid. I want to stay off medication as long as possible for now but I am glad I could finally get control of my Crohns
First of all, be wary and careful about people who answer with “natural cures”, etc. The same goes for stuff you happen to find online or even someone you meet in person. A lot of those people just try to get money from people with serious illnesses such as Crohn’s, and some of them are just well educated in pseudo science. haha.
You should elaborate more on your question. You say your doc is treating Crohn’s aggressively….well, with what? And “too many ER’s to count?” I’m curious why you have been to so many different hospitals ER’s. haha. And if you’re in pain a lot, have you been scoped and/or X-rayed with a barium study, etc? The best thing to do other than connecting with people on Yahoo Answers or online in general, is to talk about this stuff with your GI doctor! Sometimes I can’t believe the stuff people ask online, when they should be asking their doctor and discussing their situation with him/her. It’s great to connect with people who have the same illness or know about it, but make sure to ALSO bring up the same concerns/questions with your doctor. Of course doctors don’t know everything and don’t always have a lot of time to talk about every single thing at one visit or phone call. But stuff like you’re asking here, even though your question is pretty vague, I hope you’re talking to your doctor about it.
Speaking of pain, I don’t know how bad yours is, but most doctors like to avoid giving narcotic pain meds because of risk of addiction, not to mention they can mask a serious underlying problem. And, they can slow the bowel or cause nausea which could make someone with Crohn’s feel worse. Of course they can be good sometimes, but with Crohn’s and many other illnesses, it’s best to treat the illness, not just the pain from it. Surgery is also an option with Crohn’s disease, and a lot of people have had it, including me. Sometimes it’s to have part of your diseased intestine removed, but can also be for a stricture, abscess, or fistula. Anyway, this is getting long, but I sure hope this helps. :)…….make sure to talk to your doctor! haha.
I have been doing my own study on water for health and recently read, “You’re Not Sick, You’re Thirsty” by Dr. Batmangelidj.
Chron’s disease (as well as many others) are identified in his book as illness that may be cause by dehydration of the cells in our body.
I highly recommend the book for anyone that wants to learn how the body works overall and specifically how the body uses water to keep us from getting sick.
My brother has Crohn’s that went into getting Sweets disease. I have been reading everything I could get my hands on and googled myself to a frazzle for about 6 years. Here is what I have come up with
You have to keep a diary of what you eat and what you do
Write down everything you put in your mouth and if you went for a walk or did sit ups, etc (Flare ups or even good times don’t happen by accident!! Keep in mind that a flare up could be caused from your activity from 2 weeks ago and not just by what you did the day before)
I believe that every disease is caused by the digestive track..garbage in-garbage out. Take this thinking a step further and it means that diseases can be cured by the digestive track.
No 5 syllable words in your diet!! If someone wrote a book about the care and feeding of a human they wouldn’t say, “make sure you feed him 5 syllable words”. No chemicals!!! Go back to nature and cook your own foods from scratch. Kick out the gluten and fast food (some studies show a correlation between fast food and the rise of Crohn’s)
The closest and easiest hints I have found are Montel William’s latest book-”21 Days to Living Well” and you also need to get a book by Dr Timothy Brantley, “The Cure” Between these 2 books you will have made a good start
“The Cure” will benefit you because it tells of ways to cleanse your body. It tells you some foods that help certain organs, etc. This is very important because the prednisone and all the other medicines that the doctors will put you on are very toxic-read the warnings on each medicine-they aren’t fibbin!! (mostly to the liver or at least it was the one most damaged in my brother’s case)
As with any illness, but especially an auto immune disease, you have to read everything you can get your hands on. Google it to death and keep files on meds, successes and failures. You have to stay on top of this disease.
Water, as mentioned by the previous poster is very important. Buy distilled water. Do not buy “drinking water”
I have a friend who cut out all dairy and that is working for her
I’ve added this because Crohn’s is so varied that what works for one person may not work for another. But, some of the items I have mentioned are good advice for any human on the planet.
Good luck
As a sidelight, I encourage everyone to read
“Politics in Healing: The Suppression & Manipulation of American Medicine” by Daniel Haley
It explains why everyone needs to stay on top of their own health
My son was diagnosis with Crohn’s disease over 2 years ago. the doctor wanted to put him on Humira (after experimenting with several other drugs) which is anexpensive drug with life threating serious side affects. We did some research and wanted to take a new approach to combat His problem. This is what we found out. The liver is producing too much bile that is toxic to the digestive tract. The types of foods you need to eat are those that DO NOT create excessive acid or bile that help in digestion (simply put). The bile is normal unless it is in large quanity or toxic, the acid attacks the food as well as intestinal linings of your stomach
Your body is high in toxins that you need to remove and stop feeding into the problem by the foods you consume and an overactive liver.
1.) “Foods to eat” : water purified, fish, eggs, potatoes,rice, white bread,meat ground up fine or chewed well, skinless chicken cut fine, tortillas, broth, noodles plain with a little butter, plain yogurt with no extra ingredients, Goats milk or rice milk(rice dreams-Walmart) cherrios rice crispies or chex, plain oatmeal and ‘most important’ 5x/day at each meal and as a snack, legume’s black beans, kidney, pinto, buttered,refried, with no lard or spices except salt to start. Sunshine calcium and D’3, Iron supplements(in moderation)
if you are anemic.
2.) “Foods to avoid!”: fruit juice,dairy!,milk (hardest to digest, a cow use 4 stomachs!) chips!,processed foods of any kind, fast food of any kind, soda ,msg,sugar,corn, corn syrup,corn sweeteners,wheat products,sweeteners of any kind, coffee, teas,sauces, read the back labels (you are going to be surprised) for added ingredients any thing thats added, adds to your body’s toxic level. NO artificial sweeteners. foods that produce too much acid to break down the foods you eat. No alcohol of any kind NO Tabacco. pork, fatty foods.
3.) ‘Foods to eat’: in moderation after you stop bleeding and start gaining weight or are having no discomfort : certain fruits,steak,venison, peanut butter or almond butter, more plain oatmeal A multi-vitamin with minerals with 100% RDA (not large dose’s of any vitamins and 2x daily ,use shaklee as the bench mark for comparison ) of all of the B’s, hard cheese, soy milk,well cooked vegetables” Psyillium powder”.
4.)The beans,psyillium powder and oatmeal are a soluble fiber that absorb bile and remove the toxins in your body,then the liver will produce more bile but less toxic(simplified for lack of space).
5.)This is not an all inclusive list and your Doctor will disagree with the elimination of drugs, all removal of drugs should be done slowly if you decide to stop taking them, but they will add to your body’s toxic level as you continue take them. which will make your Crohn’s worse and make you susceptible to other more serious disease’s. I am not a specialist in any field or giving medical advice. I also hired KarenHurd.com at a fraction of the cost to teach my son to diet properly but you can go to her web site and get free information, but I recommend you pay her for a short time to get you healthy and on a routine faster. She has a very high success rate. Stress will make it worst so exercise and relax. Most importantly Faith, Hope, and Prayer, you will get better. God is faithful what ever the results. E-mail me if you have any questions and I can help. I don’t know if you have crohn’s but changing your diet could help you and most of us in America because of the poor nutrition we unknowingly subject ourselves too. Ibs and colitis is similar but the diet still apply’s. Routine and a little bit of self disipline and you will be drug free and have more money in the pocket. You may have other complications with the Crohn’s because you are now susceptible to all kind of complication’s and other disease’s because of the medicine you take! Try it it will work!!!!!!!
My son had blood work done 3 month after his last colonostopy and everything is normal.