Living with Chron's Disease

Discussion in 'Community Discussion' started by iBlazed, Jun 7, 2015.

  1. iBlazed macrumors 68000

    iBlazed

    Joined:
    Feb 27, 2014
    Location:
    New Jersey, United States
    #1
    I'm 26 years old, and after more than 2 decades of gastrointestinal distress I've finally been officially diagnosed with Chron's disease by a GI Specialist after a colonoscopy and endoscopy. He put me on a medication and ordered a few more tests. At the request of my mom I'm also going to an "alternative" herbal doctor tomorrow who is also a licensed MD, not just a snake oil salesman. I'm not much of a believer in natural remedies, especially for diseases as serious as Chron's disease, but I figure since she's also a real doctor so I'll listen to what she has to say.

    Anyway, anyone else dealing with this nuisance of a condition? I have a relatively mild form of it now, but my biggest fear is having it progress and have parts of my intestines surgically removed.

    This combined with my hypertension, I'm very concerned my overall lifespan is already shortened. There are no lifestyle changes I could make to alleviate my conditions that my doctors could recommend to me anymore at this point for either of my conditions. I feel like at this point I'm at the mercy of my cocktail of medicine every day. I hate this, I'm so frustrated. On the outside I look like a perfectly healthy and happy young guy, but my health problems are starting to take an emotional toll. Somehow they used to be much easier to forget about.
     
  2. Tilpots macrumors 601

    Tilpots

    Joined:
    Apr 19, 2006
    Location:
    Carolina Beach, NC
    #2
    It's no fun having serious medical issues. I don't have any advice or a pep talk for ya. Just know you're not alone, both in the sense of the MR community here and in the sense that everybody's dealing with something. I do hope you find strength emotionally to deal with your situation. I know a positive attitude has helped me cope with my conditions. Good luck going forward!
     
  3. iBlazed thread starter macrumors 68000

    iBlazed

    Joined:
    Feb 27, 2014
    Location:
    New Jersey, United States
    #3
    Thanks for the reply. I was in a really dark mood the night I wrote this. I'm exploring my options. Trying acupuncture next week although I'm very skeptical of its effectiveness.
     
  4. Tilpots macrumors 601

    Tilpots

    Joined:
    Apr 19, 2006
    Location:
    Carolina Beach, NC
    #4
    Dark moods are very understandable. Had a few myself. Just don't let them take over. It never helps, only hurts.

    If there's a remote chance of any treatment helping you out, it's worth exploring. You have nothing to lose and a whole lot to gain.
     
  5. Roller macrumors 68020

    Joined:
    Jun 25, 2003
    #5
    The good news is that newer drug therapies are quite effective in treating Crohn's flare-ups and preventing complications without surgery. However, you should ask your gastroenterologist how certain he or she is about the diagnosis, as Crohn's disease may be confused with other forms of inflammatory bowel disease. As well, the condition is chronic, so you will probably be imaged periodically. Be sure to ask your physician about ways to reduce cumulative radiation exposure, such as MR enterography.

    You also mentioned that you're hypertensive. Has the cause been found?
     
  6. iBlazed thread starter macrumors 68000

    iBlazed

    Joined:
    Feb 27, 2014
    Location:
    New Jersey, United States
    #7
  7. A.Goldberg, Jun 17, 2015
    Last edited: Jun 17, 2015

    A.Goldberg macrumors 68000

    A.Goldberg

    Joined:
    Jan 31, 2015
    Location:
    Boston
    #8
    iBlazed,

    I'm very sorry to hear about your recent diagnosis. I know first hand how debilitating a chronic illness can be, especially uncontrolled. I don't have Crohn's specifically, but I know a number of people who do and even more with similar autoimmune diseases (technically, Crohn's isn't autoimmune but the result is the same). Always remember that while Crohn's disease is not curable, it is treatable and manageable. Our minds love to automatically go to the worst case scenario, but in reality many people never make it to that point. This is not a death sentence. Hypertension is also a very treatable disease as well. Illness is rough, but I assure you know one goes through life unscathed in one way or another.

    I am a pharmD and someone who has been in the field of medicine for over a decade (I worked in pharmacy since 15), I will assure you there are many, very effective medications out there available to treat Crohn's. Better yet, there are a lot of drugs in the pipeline that will help treat this condition. Pharmaceutical science is really in the advent of "biologics" (biologically produced, non-chemically synthesized drugs to treat such conditions). One example of these are TNF antagonists (inhibitors) is as Humira, that has been shown to be very effective, even in severe cases. You also have aminosalicates, antimetabolite/antifolics, steroids, etc. Lots of options. You can expect even more efficacious drugs with less adverse effects to be released over the next few years and certainly in your lifetime.

    Just because someone has an MD does not mean they are not a snake oil salesman. If you feel you are questioning the treatment (which I think an involved patient should seek to understand all their treatments), ask the doctor to provide evidence of the efficacy of the treatment, especially compared to standard medical treatments (pharmaceuticals). Alternative treatments may be shown to "work" in some cases, but because they are natural should not imply they are any safer or more effective. Sometimes their side effects outweigh the benefit. Most of the time, only trial and error can determine if and how well something will work for you. Personally, I'd stick with the clinically proven treatment models, but this is your personal decision. I'm not advising you here, this all my personal opinion. Another option is considering stabilizing your condition with traditional medicine, and then switching later down the road.
    .
    Acupuncture is a very interesting subject. I had acupuncture after years of conventional treatments. Studies often show positive but obscure results. The question is though- how well? That depends your condition and severity. For my condition (completely unrelated to yours), acupuncture alone worked really well- better than most everything I had attempted before (doctors, specialists, therapists, practitioners, drugs, drugs, drugs, etc). At the time, my naive super pro-scientific opinions scoffed, but it ended up helping tremendously. If nothing else, it has been well documented to reduce stress. Reduced psychological stress = reduced physical stress = reduced symptoms of many diseases.

    I suggest you keep an open mind with all your treatments. If the treatments are not working (regardless if their pharmaceutical or "alternative"), be sure to advocate for yourself. Sometimes patients, especially young people, don't want to "disappoint" the doctor by saying something isn't helping. Being honest is the best way you can help the doctor and therefore help yourself. Additionally, know that YOU are the one controlling your treatment. Don't let your mother, father, girl/boy-friend, spouse, etc make decisions for you or dictate what you should and should not take. That decision is between you and your prescriber.

    As this is a lifelong condition, I suggest you take the time to deeply educate yourself on the subject. The internet offers an endless amount of information. The National Institutes of Heath has PubMed, a huge medical database anyone can access. You read about different treatments and how effective they are comparatively. Abstracts are good, but I suggest you learn how to read and interpret clinical studies technically. The Cochrane Library is another amazing resource to look at. It contains only Meta-analyses of controlled clinical trials, which means they provide really solid information. Meta-analysis and systematic reviews (comparison of multiple studies) are great resources because an independent professional has reviewed the clinical trial results and hopefully have excluded studies deemed poor quality. Not all studies are well designed, so you must develop a discerning eye. Also keep in mind, what works for one won't always work for another. Forums can be awful places to discuss conditions, as the information isn't scientific, and often biased and exaggerated (sick people are more likely to post than recovered). Remember that your doctors have the formal education and clinical experience to put together the puzzle, they should call the shots, but for you knowledge is power. Those who take an active, confident stance in their treatment often have better results.

    I know it's tough to concede that the only way to get through life is taking medicine on a daily basis. There is definitely a sense of lost of power and control knowing that we have to depend on something everyday for the rest of time. The fact is, no matter way you cut it, no one goes through life alone or without outside help. This may be the first time you'll have to take medication chronically, but it will become routine. Actually, there are a few medications out there that are injected relatively infrequently. For example, maintenance doses of Humira is every 2 weeks, Cimza 2-4 weeks, Remicade is every 8! While this diagnosis is stressful news, there are far worse conditions out there with no treatments. Be grateful for the medications we do have and you have access to. As you know, not everyone can afford healthcare. Keep things in perspective, perspective is everything. For you, medication beats the alternative, right?

    The long term prognosis for Crohn's is very good. Unless you suffer extreme complications, your life expectancy should be on par with what is expected for a normal person with your demographics. There may be flareups along the way, but everyone has negative issues to deal with in life. Your's just so happens to be Crohn's. Hypertension occurs in 1/3 adults and is generally one of the easiest to treat diseases out there. It may be that the pain and/or stress associated with your Crohn's is causing or contributing to your increase blood pressure.

    There are varying severities of Crohn's, some may allow for remission, some do not. I'm sure between medical treatment and lifestyle adjustment, you will have a very happy, healthy, and satisfying future. You say you have a mild case, I have faith things will be ok. See your docs, take your meds (when prescribed, as prescribed, every day, don't run out). You're fortunate to have family and friends to support you, as well as community here. Crohn's has huge following- there are many large and active charitable organizations, support groups, fundraisers, etc where you can connect with others with your condition. You are not alone.

    Keep an open mind and don't underestimate the mind-body connection. Emotions play an integral role into chronic conditions- stress is notorious for exacerbating issues. Stay positive and hang in there. Life will continue, just as it did before.

    - Ari

    P.S. Sorry for the novel.
     
  8. monokakata macrumors 68000

    monokakata

    Joined:
    May 8, 2008
    Location:
    Hilo, Hawai'i
    #9
    Looking to the future, there are a lot of researchers aggressively working on the relationship between intestinal flora (bacteria; microbes in general) and various diseases. The field is really taking off, at least partly because it's now so easy to sequence DNA. And the "paradigm shift" is seeing them not as invaders or malign critters (though certainly some are) but as fundamental parts of us -- as much, a person might say, as our organs. It's a seriously fundamental shift in thinking.

    You might want to learn what you can about this kind of research. There's a lot more going on with our microbial partners (and they clearly seem to be "partners") than people imagined even 10 years ago.

    Does it promise a "cure?" Not that I've seen. But it might. In the meantime, looking into the possibilities might please you. What people are learning about our guts is really quite astonishing.

    Here's something to get you started:

    http://www.webmd.com/ibd-crohns-dis...cteria-may-play-role-in-crohns-disease?page=2
     
  9. Scepticalscribe Contributor

    Scepticalscribe

    Joined:
    Jul 29, 2008
    Location:
    The Far Horizon
    #10
    Terrific post, and, even though I don't have Crohn's, I found it extraordinarily interesting to read.

    I like your comments on natural medicine, acupuncture and stress; all very much well worth heeding.

    And, to @iBlazed - while shocking and upsetting news, the advances in modern medicine strike me as making this a 'manageable' condition and one that can be coped with on a daily basis along with a fully lived life.

    Actually, I think that @A.Goldberg's comments on how stress (hypertension) can be exacerbated by other factors - and, hopefully, ameliorated by other factors, too - is more true than you realise.
     
  10. iBlazed thread starter macrumors 68000

    iBlazed

    Joined:
    Feb 27, 2014
    Location:
    New Jersey, United States
    #11
    Thanks so much for this post, Ari. Means a lot that you took the time to write all that and I definitely read it all over very thoroughly. Definitely made me feel a lot better. I have a lot of research to do, there's a LOT of information out there on Chron's so I have a lot to sift through. For the moment, I've decided to forego the acupuncture and start on a medication prescribed by my GI. I will have another colonoscopy done in 3 months to check my progress.
     

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