Day 17: Advice For Newly Diagnosed Patients

I decided to use a bonus prompt for day 17 of National Health Blog Post Month since making a playlist for my health community or writing out my strengths and weaknesses didn’t really appeal to me today. I want to talk specifically to newly diagnosed patients in this post. When you are first diagnosed with ulcerative colitis or crohns disease, the odds are it will be the first time you really hear of the disease. You may hear of a fourth cousin who had some stomach issues when he was in his 80’s but other than that, it will most likely be an entirely new word in your vocabulary. Even though 1.4 million people suffer from some sort of Inflammatory Bowel Disease in the United States, it is not an easy thing to talk about which is why you don’t hear about it as often as diseases that aren’t even as common. However, even though you may not hear a lot about it and be completely overwhelmed just know that there are 1.4 million other people just in the U.S alone who can relate to what you are going through.

After receiving a diagnosis of either ulcerative colitis or crohns disease, you are understandably going to feel very overwhelmed. All of this new information about a disease you most likely never heard of coupled with people asking you about your bowel movements constantly is really hard to adjust to. As someone who has been there I can tell you with almost absolute certainty that you will eventually adjust to it. You will eventually get the lay of the land and figure it all out. It will take time and you need to allow yourself that time. IBD changes you in many ways. The focus on food is enormous. Many of the medications come with upsetting and often dangerous side effects. Depending on how severe your IBD is, the odds of you needing to be hospitalized at least once is almost a definite. There is also a possibility that you may need to have surgery somewhere down the line. I know everything I am saying to you right now is making your head explode but it shouldn’t because I am talking hypothetically.

Some people are diagnosed when they never presented any symptoms in the first place, were told to change up their diet and then continue to live their life symptom free. Some people are diagnosed after they are sick for a while and once they find the right medication, they are in remission and go about their lives. And of course there are those who are very ill, don’t respond well to medication and do eventually end up needing surgery. Those are three basic scenarios that can happen and most people have some combination throughout their life. It is so important to not get bogged down with information that may never pertain to you. Sitting down and doing research on the computer about medications and reading through peoples’ stories on the internet is great and can help you to better understand the disease and what may be in store for you but some of these things may also NEVER apply to you. You may never step foot in a hospital. You may never need prednisone. You may never see the inside of an operating room. So, while it is wonderful to be an educated patient and learn everything there is to know, there is such a thing as information overload as I discussed in the post here

I also want to tell any newly diagnosed IBD patient how critical it is to find a doctor that you click with and trust. You will most likely need to maintain a relationship with this individual so it is imperative that this doctor treats you with respect, allows you to ask as many questions as you need, and is someone you can rely on. I am not going to lie to you- ulcerative colitis and crohns disease are devastating illnesses for many people. Having a doctor that you know is behind you and is there for you as much as a doctor can possibly be is vital to your emotional and physical well being. I would also highly recommend (if possible) seeing a therapist once the dust settles. I have always said that it was too difficult for me to deal with my physical and emotional health at the same time as stated here ( ) but I do feel that it is important to be aware of the potential emotional ramifications that come alongside with having inflammatory bowel disease.

When you are diagnosed with ulcerative colitis or crohns disease, you are not given a life sentence. Will life be more challenging than you are used to? Probably. Will you like it? Definitely not. Will you survive it? With the right support system, absolutely. And like I mentioned earlier in this post, when you are ready to reach out to other members of your health community, there will be 1.4 million other people in the United States alone waiting to lend you a helping hand and be there for you every step of the way.

  • Jodi

    I’m sure that post with be of great help to many people. It does help someone with a newly diagnosed disease of ANY type, that they are NOT alone and that people with their disease Can and do thrive.
    You continue to do great work Maris.