| Author | Message | ||
     Bgreiner |
I was diagnosed with Crohn's a couple weeks ago, and am nervous about my treatment options. It seems like my options are limited to steroids which will make me moody and hungry, or immunosuppressants which will essentially turn off my immune system. It is a horrible disease and has made me realize the value of good health. If anyone here has experience with this issue I would love to hear from you, as this is all brand new to me. Thanks. | ||
| Wolfridgerider |
I have ulcerative colitis and the best advice I can give you is take your meds! Once you have it in remission don't think you have it beat. You MUST take your meds just like the Doc prescribes. If you don't it will flair back up and you will be cussing yourself. I know it sucks and I'm sure you have been thru the "why me?" phase... hell, you may still be there. But you need to stay on top of this or it will really start to mess with your head. I know messed with me for awhile. Hey, a colonoscopy can be fun.... ya get drop a few pounds in a day by not eating and then drinking that stuff that makes you bung hole spew like its a stunt double in the Exorcist. The Doc gives you some good drugs to knock ya out for the procedure... and then you get to pass some of the best farts ever!! I'll send you my # in a PM if you want to talk about it.... | ||
| Bgreiner |
Haha thats funny, yes I have been down the colonoscopy road already, and have lost a lot of weight through this. I agree that the meds needs to be taken, it is just a matter of finding the right one. Thanks for the insight and the PM. | ||
| Jasonnennig |
Ben...My father suffered with Crohns Disease and Ulcerative Colitis for thirty years. I wish he was here to speak with you but he died about four years ago of colon cancer. If I have any second hand advice, it is to find a experienced doctor for treatment. It is also important to not underestimate the destructive nature of the illness. Don't be afraid to take the medication. My father took the steroid Prednisone for many, many years. It has side effects, but you got to do what you got to do to stay healthy. Believe me you don't want a colostomy bag. It is also important to watch your diet. Talk to a dietitian for a proper diet plan. My father also found stress played a role in his condition. Try to eliminate as much of it in your life as possible. Keep a positive attitude and things will be OK. God Bless... Jason (Message edited by jasonnennig on December 10, 2009) | ||
| Bgreiner |
Thank you sir, I agree that finding a good doc is very important, because opinions vary on this subject. My doc wants to start me on Remicade, which is an IV infusion. The side effects are less than desirable, but the medication is said to work wonders. They often mix that treatment with a low dose of Prednisone. | ||
| Jasonnennig |
Ben...My father was treated with Remicade. Because of his advanced condition it did not work well. I know It's one of the newer treatments and works very well for many though. If I were you, I would jump at the chance to be treated with it. As far as side affects, my father had to stop the medications so so he and my mother could have me. The drugs wiped out his sperm count. He got very sick when he did this, it almost killed him. I am an only child. Like I said, do what you got to do to stay healthy. I hope all goes well... | ||
| Teddagreek |
I dated a girl that had it... she had a couple surgery's if I remember.. She had it under control with a special diet... Find the best Doctor, weigh your options and don't settle... Good Luck.. | ||
| Bads1 |
I was very young but my oldest Brother back in 74 was one of the first to be diagnosed with Crohn's in the US. It almost took his life. Back then they didn't know what to do with it. Now they have learned to manage it. My Brother a few years ago at the age of 55 passed of cancer. I think hes in a better place now. (Message edited by bads1 on December 10, 2009) | ||
| Bgreiner |
Whoa the Doc never said anything about loss of sperm ha! I better check that one out. Like people are saying I think my biggest fear is dying at a young age, as I am only 25 now. But I am gonna battle this to the end. | ||
| Whatever |
One of my best friends has it and he manages it entirely through diet. Do your research and be prepared to make some drastic lifestyle changes. | ||
| J2blue |
Ben, I have it and my brother has it. I'm the lucky one, though. My brother developed symptoms in his early twenties that were severe from the start. Prednisone has unfortunately been the drug his body has responded the most too, but it has done severe damage of its own. He has had several surgeries and now has a colostomy. He has been very stubborn, though, about taking better care of his health despite this disease, and, though hard to prove, it would seem his quality of life and length of life are suffering. There is one curious link between the diseases Crohns and Ulceritive Colitis and the habit of smoking. Nicotine was discovered in the past decade to have opposite effects on each. With UC nicotine has a beneficial effect, however, with Crohns nicotine has a seriously detrimental effect. So if you want to know of one life style change you can make then get rid of any nicotine habit you may have. If you don't have the habit then you are fortunate. I developed symptoms only a few years back, in my 40s! I was lucky to work at Vanderbilt University and had access to one of the best Digestive Health Clinics in the nation. My doctor put me on an immuno-suppressant(azathioprine) and an anti-inflammatory(asacol). This combination was very effective for me and put me into remission. There was a beneficial side effect from the azathioprine, my allergies disappeared!  My other suggestions are: join a local Crohns support group, experiment with diet, and keep an open mind to improving your health in general. There is no reason why you can't have a long and quality life so don't fall into despair. I wish you the best as you learn to deal with this condition. | ||
| Methed |
Wow, I feel your pain--quite literally. I too was diagnosed at 25, and having just started a family at the time it pretty much screwed up the rest of that year for me. My specialist had me get the 'old man river' cam and to my surprise they found some pre-cancerous tissue which they removed immediately. Sparing y'all from any more graphic details, I was advised by my general practitioner--also a family friend--to lose some weight and start getting some exercise; he confided that most specialists/doctors don't feel they can mention this as it is a bit taboo to link health problems like Crohns to weight given inconclusive studies and whatnot. Fast forward to last year when I went in for a follow-up 'scope as a precautionary measure and nothing was found. Nothing. In fact, after leeching blood from me again and running the same tests that had been taken previously to verify my diagnosis, my condition was classified as so minor that it more resembles IBS. I've since been able to completely ditch the Asacol for something a lot milder. I know that weight doesn't play a factor for everyone with Crohns, and I was not more than thirty pounds over, but it is clear to me that this weight loss in addition to identifying triggers like stress and certain foods has dramatically improved my life and greatly reduce the risk for colon cancer and who-knows-what else. Of course, YRMV. | ||
| Pkforbes87 |
A real good friend of mine was diagnosed during his first deployment to Iraq. I don't know the details of what is required to deal with it but I know that meds are a huge part of it. He was able to stay in Iraq (his choice) for his full deployment. Even eating MRE's didn't cause a problem because of proper meds. I'll PM you and try to get you guys in touch. Maybe he has some experience that could help. | ||
| Johnnylunchbox |
Got worms? http://www.webmd.com/ibd-crohns-disease/news/20040 519/wormy-cocktail-fights-crohns-disease | ||
| Buellish |
Ben,I have had Crohn's since I was 35.I'm 54 now.There are a few things I have learned over the years.First you have to have a positive mental outlook,be determined to be healthy.Convince yourself you can beat it. Second,as posted above diet plays a huge part in controling your Crohn's.Your body will tell you what you can and cannot eat.I also find that how much I eat has a big effect on how I feel.Too much food and I pay for it big time. Third,keep good insurance.Drugs used in treatment of Crohn's are expensive.I have been unemployed for 14 months and don't have insurance,its a big problem. Prednisone works wonders,but you don't want to stay on it long term. Remicade works very well for a lot of people.But since its given by infusion the cost is a lot more than similar drugs such as Humira and Cimzia that you inject yourself. I have been on Asacol for years and have found that it works well as a maintenance drug,if you have your Crohn's under control.Not so well on its on if your in a flare up. Finding the right drugs to control your Crohn's takes a Doctor willing to consider whats available and some luck.Don't get discouraged if the first treatment doesn't work well. I am amazed at how many Badwebers have spoken up and said they have Crohn's/Colitis.I shouldn't be,I've just never posted about my Crohn's. Good luck to you Ben.Just holler if you need anything.You've got a big support group here. Mike | ||
| Wolfridgerider |
According to my Doc, they don't see Crohn's/Colitis in 3rd world countries. Whats up with that? It has to be something in our diet.... the water... Something! I know I could stand to drop a few pounds... sleep apnea & UC... it doesn't pay to be a fat ass. | ||
| J2blue |
Thanks for that link Steve. That is some new information I hadn't uncovered. | ||
| Alchemy |
There have been early clinical studies with photopheresis in the past. I can't remember the entrance requirements but for clinical trials there usually has to be a failure of some other treatment modality. I don't think the trial is presently active but it gets discussion. Photopheresis is FDA approved for an immune related disease but not for Crohn's. Just keep an eye out for any word on photopheresis and clinical trials. It is a bit of a hassle but has a very good safety record and side effects are modest to say the least when used as FDA approved. | ||
| Stoked |
Specific Carbohydrate diet (SCD) got my wife off all meds (steroids and NSAIDS) after a solid year of being in a flare up. If nothing else, get off as many processed foods as you can. The SCD is a method of attacking the disease where it starts. Vitamin D seams to also be something you should look into upping significantly. Apparently Vitamin D plays a big roll in cotrolling the immune system's response and we don't get nearly enough. This is sort of the same as the meds, attacking the results of the problem. But that is just as important IMO becuase your body should be able to handle inbalances in your gut to a certain extent as long as your immune system is working properly. The only way for the immune system to work properly is if the things that control it and supply it are present. Soluble fiber is super important also once you get it under control. The type of fiber in regular old metamucel is good. Forgot to mention fish oil. 6000 to 8000 grams of fish oil a day is a good anti inflamatory. Supposedly the vitamin D also shows anti imflatory properties but that's probably due to immune system control. (Message edited by stoked on December 11, 2009) | ||
| Percyco |
I have had Crohns since I was 25, I will be 47 next month . I have had two flare ups that have landed me in the hospital in the past 22 years. The first one was brought on by eating a salad (stupid me).The second time was this past spring, both times were a 3 day stay without eating and being on IV. Other flare ups I have just ridden out at home(usually one every couple of years). I can usually feel them coming and I will quit eating other than jello and liquids for a few days. I try to stay away from dairy products and uncooked fruits and vegetables (anything that is naturally hard on the plumbing). I have taken Sulfasalazine and Methylpredisolone since the beginning,only a small dose of 4mg daily of the Prednisolone . I am pretty healthy with no drug side effects....at least at this point . I pretty much do whatever I want other than I am very careful what I eat . I work with two women that also have it,they have a much worse time than I do. One is in her mid 30's and does the infusions the other is my 59 yr old second cousin and she has had multiple surgeries and damn near died. When I was 25 I thought I was dieing until my doctor straightend me out. Flare ups suck ! It couldnt hurt anymore if someone had shoved a spear threw your guts ! I watch what i eat,dont smoke and rarely drink and that seems to work for me. Good luck and hopefully you can live a fairly trouble free life like I have ! | ||
| 80rs427 |
I have had Crohns since my late 20's (I'm 52 now). Back then it was a tough diagnosis and nobody around here seemed to know anything about it. They treated me initially with prednisone. I'd start at a high dose and taper to nothing. That cycle would repeat when it flared up. My normal weight was around 200 pounds, but I was down to around 100 pounds when I was diagnosed. I had surgery for blockage & perforation in 1994, and they removed a foot of my small intestine (and my appendix as long as he was in there). I take B12 shots monthly to make up for the missing section. After the surgery, I was put on a combination of Asacol and Imuran. After a couple years, I was taken off the Asacol and remain on 100mg of Imuran daily. Up until recently, that has worked well for me. I had a stressful construction year this summer, and I could tell it affected me (I'll spare you the details). I went to my doctor in November and a CT scan shows a narrowing again in the same spot I had removed before. The radiologist recommended surgery, but my doctor has me on 40mg of prednisone a day to see if it will help. I'm getting along, but I'm not feeling "normal," and I go back on the 22nd to have it checked again. My advise is to find a gastroenterologist that you are comfortable with and that you trust. It is a long term condition, and you want someone that can help you to deal with issues that come up. There are several others in my small rural community that also have Crohns, and they take the remicade infusion. From what I hear they are having good results from it. If I can help in any way, please feel free to PM. | ||
| Bads1 |
Man you guys I feel for you's. My Brother passed 9 years ago. He would be 64 now. It took most of his main intestine. His ankles were fused because it got into his bones. One knee was fused but later he broke that leg just above were it was fused. They tried to fix it but infection was not clearing. He lived with a open wound that he had to dress every day for nearly 7 years. Then it finally got so bad that they had to take his leg just above the knee. Two years after that he got Cancer and battled for just over a year and it finally took him. My Brother lost his whole life. Job,wife,and children to Crohns. So anyone that I hear that has it I very much so feel for. My Brother was also my God Father. You guys take care of your selves. | ||
| Johnnylunchbox |
RE: 3rd world country comment and the lack of Crohn's. See my link about worm therapy. We certainly evolved with a variety of fauna and flora in our guts. Our ultra sterile society has brought on a lot of exaggerated immune response type illnesses (the immune response is exaggerated, not the illnesses). 3rd world = not so sterile. Therefore there are less auotimmune diseases. For example, one of the best ways to insure your child will be minimally allergic to anything is to make sure they play in the mud, and not slather them with antiseptic concoctions. I hope all of you suffering from this find the right course of therapy that works for you. I know several people who have dealt with this, and I have seen their pain. | ||
| Wolfridgerider |
I saw the link... its amazing that the effort to make things better has screwed so much stuff up. Same thing can be said for breast cancer and third world countries. | ||
| Macdiver |
To the OP, find a teaching hospital nearby and get another opinion. Starting on Remicade is a little overkill. Remicade and Imuran should be used once the other drugs prove ineffective or for other reasons. My wife has Crohns and can not take Asacol or the other ASA drugs. They use pred to treat flare ups and recently started her on Imuran to keep her in remission. The local docs had her all screwed up till she went to the university hospital. | ||
| Bgreiner |
Thank you all very much for all the response and support. I apologize for being inactive over the weekend, I was in the woods attempting to locate something called a White Tailed deer. Apparently they go into hibernation this time of year. But back to the subject, I can tell that I have "trigger" foods, and need to start keeping a diary to figure out exactly what they are. My next goal is to work with my Doctor to find which meds work for me. I just started my very first med-Entocort, three days ago and so far feel the same. I realize it will probably take some time for the meds to do their job so time will tell. I do feel that I have a good gastroenterologist and look foward to putting this thing on standyby. Again thank you all for speaking up, this type of thing is not easy to talk about. | ||
| Cityxslicker |
What the hell is my doc not telling me about Prednisone?!? thats two posts on it. I dont have Chrons but they did Rx the Prednisone like candy | ||
| Wolfridgerider |
Prednisone will knock down anything inflamed.... Got posion ivy, Got UC, got crohns, got arthritis, go allergies....give it Prednisone | ||
| Alchemy |
There are serious side effects with Prendisone so be sure to check the long list. A lot has to do with the exposure/dose. Definitely a careful physician discussion if the dose is going to be high or the duration long. | ||
| Bgreiner |
Is it true that Doc's get "kickbacks" from drug companies to prescribe their product? I would like to believe that this is not true, but more than one person mentioned this to me. | ||
| Cityxslicker |
I can tell you from working several summers as a pharma-suit .... That is an accurate statement. Ready for the next one? I was pushing Viagra back at the country golf clubs and retirement centers back in the 90s. Kick backs are just the beginning of the perks. | ||
| Toona |
I was diagnosed with Crohns Disease in '83 at the age of 18. I'm 44 now. I had something burst on my intestine that put me in he hospital for 13 days from the Peritonitis. During the surgery, the Dr removed a bunch of my intestine and colon. In the 26 years since, I've never taken a single pill for treatment..... This past fall, I had a stabbing pain that sent me to the local ER for diagnosis. Turns out my CD flared up and after a few days of meds, things are back to "normal". I've since had a colonoscopy and swallowed a camera pill that took lots of "pretty pictures" of my internal plumbing. The Gastro Dr wants me to start on some kind of prescription for the CD. I haven't even gone to the pharmacy to pick it up, so I can't tell you what he prescribed. I still haven't had any pain since the flare up. I eat just about anything I want. Certain foods give me big time gas-cookies/baked goods. That doesn't stop me from eating them,a s they don't cause any pain. I just make sure I'm going to be alone for a few hours afterwards.  Apple Cider cleans me out, so I haven't had it in years. I don't have any reaction to spicy foods. I can eat salads, cashews/nuts, etc. I have another follow up with the Dr. in a month or so. Maybe after all this talk about others reactions/symptoms/treatments I'll stop down at the pharmacy and see if they still have my drugs there. | ||
| Bgreiner |
City, that's what I thought!! I am trying really hard to trust my specialist, but am having a hard time doing so knowing that they may be biased. I am currently looking into "natural" solutions as an alternative. Toona, I now hesitate to recommend filling that scrip because the more I research this, the less I like the meds. I know that in the end it may be what is necessary, but the thought of ingesting natural products that will help seems a much safer route. | ||
| Thepod |
"Is it true that Doc's get "kickbacks" from drug companies to prescribe their product? I would like to believe that this is not true, but more than one person mentioned this to me." Highly illegal. Docs however, can be advisers for pharmaceutical companies and other companies that make medical implants. If that is the case, they should provide you with full disclosure prior to use of any drug. |
