21 yrs with Crohns

Hello,

I'm new on this site as of today. I'm 34 and was diagnosed at the age of 13 in '93. In '04 I had my first bowel obstruction/surgery. After that surgery I was sick of doctors visits, medicines that didn't work, and bills bills bills so I avoided them all together. I am now seeing a specialist in Chicago after not seeing anyone for ten yrs. I must say I'm extremely upset with the lack of treatment options there are still after all this time. Not only that, but I'm seeing one of the best specialist in the country and the only thing he can offer is Humira?! Really?!!! I tried Remicade ten yrs ago and had a severe reaction to it. I have had fistula's, kidney stones, osteoporosis, and many other complications with Crohns. Here I am again. Dealing with a blockage, on a three day liquid diet, and back on Prednisone. The same horrible drug they had me on 21 yrs ago when I was a little boy. Where is the research??? Where is the technology??? Why is the only answer prednisone???? Doesn't this frustrate anyone else??? It's hard enough trying to make a regular/happy life while living with Crohn's disease. I try and make the best of this condition I have but get easily frustrated from the lack of help and treatment options. I truly think that Crohn's disease isn't getting the care it needs due to the fact people are afraid to discuss it because they find it embarrassing or private. I am happy that I can finally be covered by insurance after yrs of medical debt even though the whole pre existing condition bit is ridiculous to begin with. Also I'm happy to see Commercials about Crohn's disease even if it is just pharmaceutical companies trying to make money. At least they're spreading awareness somehow. I joined this blog today because I've never joined a support group or blog this whole time I've been living with this disease. I look forward to meeting people on here and hearing their stories about life with crohns. I know it will be good for me to talk to someone about my life. Maybe with my experiences I can help others who are new to this whole lifestyle and just maybe someone can help me as well....

Hi and welcome.

I agree, it is ridiculous! Where are the people dumping ice on their heads for us? I have not gone on any biologic treatments yet and kind of fear them for the fact that that's he last option I have. It gets very depressing knowing that there is nothing next and the thought that it could stop working.
I'm new here as well. Diagnosed with Crohn's at age 17, 8 years ago.

Welcome! We are all frustrated by the lack of progress but that being said they know so much more today and the current research is promising. If clinical trials go well we should have a few new drugs in the pipeline. I agree the commercials are good for getting the word out but I just hate how it minimizes the severity.

Well Fefe I wish I had some words of encouragement for you. Key to this whole condition it's to stay positive, laugh, and always have support from people in your life. Hardest part is relating with others I've found.

Nogutsnoglory I couldn't agree with you more. I actually laugh and joked with my roomate about making a Crohn's disease spoof commercial. Except making it realistic and screaming like a mad man while I get rushed to ER. Lol

Thanks Johnny. I actually do laugh it off most of the time.

It is frustrating. The anti-TNFs were a good breakthrough but they don't help everyone. I hope Entyvio-the newest one- helps many who were not helped by Remicade and Humira or had to stop for other reasons. Ebola hit the news again and then the Americans brought back to the US were treated successfully. It's a good thing, of course. But, I thought- where is the fast progress for my son's disease?

Johnny,
Have you tried Humira? People have much less adverse reactions to it than Remicade because it is made with human proteins and not mouse protein. Maybe it would work for you and you could get off of the pred? I'm currently on Humira, but I have yet to see results. But I know it has helped countless people with Crohns. My Dr also mentioned the med Entyvio to me. It's a new one that I can try if Humira does nothing. Its a biologic medicine, but it is not an anti TNF like remicade and humira. It works in a different way... I don't fully understand it but it has to do with regulating your white blood cells. There are also some interesting drug trials going on right now. You can read about one of then by searching for "ssi vaccine". The SSI trial is testing for a drug that is showing a lot of success I helping those with Crohns, but unfortunately we won't see the drug for another few years in the US. The SSI drug works by stimulating immune system, which is kind if the opposite of all of those immunosuppressants out there.


I'm sorry that your not feeling well. Do you stick to a special diet? I find that if I stick to a very specific diet, I can drastically improve my symptoms. Although sticking to it can be easier said than done. For me, any amount of coffee, alchohol, spicy food, junk food, or too many nuts, seeds, broccoli (because of gas) or milk will put me into a flare.

Hope you start to feel better

Welcome Johnny, I totally understand your frustration! My son was diagnosed two months ago and it has been a very difficult summer for us! I have tried to keep calm and approach this whole thing stoically, but I often feel like screaming to the world to wake up and DO something to find a cure. The process is so damn slow! This forum has been super helpful. I usually look at the research threads. There are some super smart people researching, linking and commenting on very good articles that give me hope. For me, the very best hope I have at the moment is the MAP vaccine. I am also hopeful about the SSI, but I think my son is infected with MAP considering his type of symptoms and our lifestyle (ate healthy, exercised, etc.). The MAP vaccine will never come to trial though, if people do not support it financially. At the moment, they are trying to raise money but for a reason I cannot understand, few people from this forum have given anything. Big pharma of course won't fund it, so it is up to people who have a direct interest in it to step up and provide the means to get it to trial. I think many people have been promised a "cure" and have been so disappointed that now there is a lot skepticism. Unfortunately, I think people with Crohn's and their families need to demand attention and advocate strongly, loudly and forcefully for research. Think ACT-UP and AIDS. That is the way things work, but I think most people are simply too tired and/ or trying to make it through their day, accepting their condition and trying to live as normally as possible. Go to the crohnsmapvaccine.com, poke around, read their FAQ and about their diagnostic test. Maybe it will give you hope. One thing I have also noticed is that most of the true promising treatments (cures?) come from abroad ... England, Australia, Canada. I also know of a French company working on a promising treatment as well. It seems the American GIs are a pretty conventional bunch. Sigh!

Interesting waking up and reading your comments today. Nice to know I am not alone out there. I remember reading an article about MAP years ago. I think my dad sent me a post about it. Its still seems VERY interesting even today. No one in my family has Crohn's Disease and I've always pondered the idea of being infected by something yet discovered. I truly think there is more out there than we know about and yes I agree that the doctors here in America are way to conventional. It's actually pretty sickening when its shoved in your face.

For example, I'm a waiter in a fine dining restaurant in Chicago. I've waited on private pharmaceutical companies during their conventions while they talked about new treatments and past treatments. I almost felt like a spy because I was so knowledgeable about everything they were talking about and I couldn't say a peep due to me having to keep my job. We all know the pharmaceutical companies are ripping everyone off. The inventors of all these drugs getting passed to just "treat" crohn's are making incredible amounts of money. A cure would end that. That's like asking Nike to stop making shoes. They're not going to. I do not want to seem too cynical. There are people and doctors out there that truly want to see crohn's cured. Not everyone out there is in it for money. It's just sad to see greed slow down the process for a real cure.

Having Crohn's disease for this long has been very challenging. I do follow a strict diet and I think that everyone with this illness has to. I am apart of the research program at the University Of Chicago now. My doctor has me on Pred., entocort, and cipro(spelling?) currently. The next step will be Humira I guess. Unless I see more positive results with Entyvio. Otherwise I will ask him about that route. I also take probiotics and vitamins of course. Thank you all for your kind words and encouragement. You are all in my prayers