I’m a newbie

Hi , I'm so glad you are reaching out. While I'm sorry to hear about your recent Crohn's diagnosis, I'm glad you found our community here. The flares of an inflammatory bowel disease can be challenging, and frustrating, so I hope some of our community members can share their ideas and tips with you for managing flare ups. Although I don't have personal experience, I know a lot of our community members track their symptoms (and what foods might be triggering) and avoiding those foods.

In the meantime, I want to share a couple of articles with you here. This article has information about coping with flare ups, https://inflammatoryboweldisease.net/living/coping-crohns-flare. And this article was written by one of our health leaders about 7 ways to help manage the ups and downs of Crohn's, https://inflammatoryboweldisease.net/living/coping-crohns. And finally, a different advocate shares his advice on flares, https://inflammatoryboweldisease.net/living/advice-for-crohns-flares.

Finally, I hope I'm not overwhelming you with information and links, but I wanted to share this article with you from one of our advocates that she wrote to the newly diagnosed, https://inflammatoryboweldisease.net/living/newly-diagnosed-support.

How are you managing currently? Have you had any discussions with your doctors about treatment plans? Please know that our community is here for you, and don't hesitate to reach out any time, whether you have more questions, need to vent, or could use some support.

Sending you gentle hugs. -- Warmly, Christine (Team Member)

With a recent diagnosis, you are most likely very concerned about your future. And you likely have some discomfort right now. And you likely feel like you not want to bother your doctor with every single question you have. So it is good you are reaching out. We are not doctors but most people in the group have Inflammatory Bowel Disease. IBD is an "umbrella term." Both Chrons and Ulcerative Colitis are conditions under this term. Chrons can occur anywhere in the digestive track - from the mouth to the anus. Ulcerative Colitis usually only occurs in the large intestine. I have Ulcerative Colitis and have had this for over 35 years. I have been very fortunate in that for most of that time the treatment has been very helpful. I have had 3 different medications to treat my condition. When I have had a flare I reach out to the doctor treating me for help. Medications to control IBD are long term medications. You will likely need to take medications for the rest of your life.

When a patient is newly diagnosed they hear terms they are usually not familiar with. For instance what is a flare? What happens in a "flare period" you generally have more discomfort/pain. And you will most likely have many more bowel movements. I currently have a mild flare. I am not passing bloody stools but that can happen, but I am having many bowel movements - like 12 or more a day.

In the early phase after diagnosis, it is important to keep a food diary. Write down what you ate including snacks, and what was your body's reaction. You might have a reaction to a raw apple but not to applesauce. It is important to know what you can eat without causing problems for you. Please remember this is a very personal disease meaning it is your disease, not mine and not your friend's. Every patient with IBD handles food differently. Of course, there are similarities in the commonality of IBD but how it affects each patient canbevery different. It is very important to understand that this condition is very individualized regarding any particular food . That is why it is important to keep a food diary. My doctor has said to me "Eat what doesn't bother you." By keeping a food diary you will discover what you can eat without causing problems.

It is very important for you to become very, very familiar with how your body functions. Now that you are diagnosed you are most likely taking some kind of medication. There are lots of medications people may be taking. Your doctor has prescribed the medication that he/she feels would work the best for you. It is very important that you take the medication as prescribed. It is also important that you stay in touch with your doctor and let your doctor whether or not the medication is helping you. For instance, in the early days after my diagnosis, the prescribed medication made me very nauseous. Some medications for IBD require frequent blood work so that your doctor can track how it is affecting other areas of your body. So it is important to follow your doctor's instructions.

Becoming familiar with your body may also help you prevent a bad diagnosis advanced cancer. This happened to me. I had a bowel movement change. It happened over several days. It didn't act like a usual flare. At this time, I had had the Ulcerative Colitis diagnosis for over 30 years. My GI doctor scheduled a colonoscopy within a week. I was diagnosed with colon cancer. It was very early. There was no tumor -- only a reddened area about 2 cm wide. I saw several doctors for a second and third opinions and ultimately decided to have a right hemicolectomy. The surgeon removed the right side of my large intestine (the ascending colon) and connected the small intestine to the transverse colon (the transverse colon goes across your body about at your waist). Therefore I do not have an ostomy bag. I had no chemo and no radiation. Had I waited to see my doctor, I likely would not have had this good outcome.

For your own comfort sake you could use baby wipes to cleanse yourself after a bowel movement. Desitin and similar products can also help heal and comfort your rectum. When I have a flare I sometimes use a Sitz bath with epsom salt in the water. That helps to both soothe and heal the tender areas around the rectum. Sitz bath products are widely available at drug stores and online.

IBD is an autoimmune disease. It is one of many. When you have one autoimmune disease it increases the risk you may develop another autoimmune disease. This is another reason to know your body very well. You do not have to panic about this. It doesn't mean you will get another autoimmune disease but it does mean that you might. Just know your body.

Knowing other people with IBD and/or asking question as you did is important to your understanding of the disease process. I have a friend who has Chrons and we take the same medication. I have another friend who also has Chrons and her medications are different than mine. Continue to ask questions. Continue to learn. The more informed you can be about this condition, and how it affects your body the better your quality of life will be. When you go to the doctor have your questions written down. I use the "notes" section in my smart phone for this. Also tell your doctor not just your symptoms, but exactly how your issues affect your life. The doctors may be very good but they are not mind readers. They cannot address your lifestyle problems from your disease if you do not tell them how this affects your life.

I taught school for many years after my diagnosis. I am retired but I still do not want to be in the bathroom all day!!!

Continue to confidently march forward! You can handle this. This is a life altering condition but it is NOT a death sentence nor is it a constantly debilitating condition. It does require a positive attitude and monitoring of your symptoms. But you can continue to enjoy your life.

God bless,
Judy