In November 2017, I was diagnosed with Crohn’s Disease. After years of having problems with my stomach, it was a mixture of emotions when I finally got a diagnosis. During these past 4 years I’ve really learned a lot since my diagnosis, not only with how having Crohn’s affects my stomach, but I’ve also learned a lot about diet, medication, what helps and what doesn’t help, and lifestyle changes. I’ve learned to listen to my body, to know when I’m either coming out of remission or achieving remission. I’ve also been able to be aware of what triggers a flare-up, and how I can intervene to help calm things down or to just simply know when to slow down and rest.
Crohn’s Disease is one of the two main forms of Inflammatory Bowel Disease, also known as IBD. The digestive system becomes inflamed, swollen, and ulcerated. Crohn’s Disease can affect any part of the digestive system, from the mouth to the anus. The main symptoms can include pain in the abdomen, diarrhea which can sometimes include blood and mucus, tiredness, and weight loss. Crohn’s Disease is a life-long condition. Crohn’s can be treated with medication such as daily tablets, Immunosuppressants, and biological drugs. These help to reduce inflammation and symptoms, control flare-ups and help achieve remission.
Everyone’s Crohn’s Disease journey is different.
I think that soon after I got my diagnosis, I started to realise just how different each person’s IBD journey is. What may work for one person, may not necessarily work for someone else. Over the years I’ve definitely found this out. Medications that may work for one person, may look a little different for someone else. Through the Crohn’s & Colitis UK Facebook group, I found very quickly that each person’s journey, symptoms, medication and diet was very different to another person’s. I found that some foods that people may avoid, I was completely fine with, and that food I might avoid is completely fine for someone else. I found that I was getting to know my body better and finding out the things which helped, and steering away from the things which didn’t help.
For myself personally, it’s been a journey of finding the right medication that works for me, experiencing coming out and going into remission a few times, trying different medications and finding what works best for me when it comes to diet and exercise, and any lifestyle changes in order to avoid flare-ups.
Some things can be trial and error
Having Crohn’s has taught me that sometimes it can be a bit of trial and error when it comes to a number of things. The Crohn’s & Colitis UK Facebook group has been a huge help for connecting with others, looking at discussions, and looking at people’s thoughts, opinions, and experiences. It’s also made me realise just how each person’s body may react differently to medications. For my Crohn’s, I’m currently on 3 different medications, but it has been a bit of trial and error. I’m now on a combination of medications that are working and helping to get me back into remission again. Unfortunately, one medication I was put on a few months after being diagnosed stopped working after about 6 months, which meant I then had to try another one, which thankfully has helped a lot over the last 3 years.
I’ve also found that it definitely can be trial and error with food! Even now, it can be about seeing what foods I’m OK with and if there are foods that my stomach may not like. Prior to my Crohn’s diagnosis, I was told that it was IBS causing the problems. With advice from the hospital at the time, I spent a few years cutting out all dairy, wheat, and gluten from my diet along with onion and garlic. But after I was told I had Crohn’s and was put on the correct medication, I found that I was able to start slowly adding back into my diet, dairy, wheat, and gluten. What I thought was food causing the problems and IBS, was in fact Crohn’s Disease, it just hadn’t been picked up. But I do find that there are some foods that don’t quite agree with my stomach. I still try to not have things with onion and garlic in, and even now, it’s still trial and error with food, as sometimes I may eat something and know not to have it again. Spicy food for me is also a big no!
When to rest.
Having Crohn’s has definitely taught me more about when to rest, especially when my body starts to feel very tired and achy, I know it’s time to either sit or lie down, maybe even to have a sleep. I notice this a lot more on the days when my Crohn’s is flaring. I’ve also become very aware that if I don’t rest for a while when my stomach is flaring, I’ll know about it later! So, I find that even if it’s to take half an hour out or to lie down for a little bit, it’s a huge help to my body.
For me personally, I find my Crohn’s to be worse in the mornings, I’m not sure if anyone else is the same? So, sometimes it may take me a while to get going in the morning and some mornings, I feel that I have to lie in bed just a little bit longer. But, I find that having that little bit of extra rest works wonders. I also have PoTS Syndrome and IC, so sometimes, between the combination of all 3, I usually know it’s time to rest!
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Crohn’s has taught me how to listen to my body better.
Having Crohn’s has made me so much more aware of how to better listen to my body. Whether it’s knowing when to rest, what food may not have agreed with my stomach, knowing what foods would be best to eat that day, knowing when something doesn’t feel quite right, and being aware of how my stomach is doing with medication that I am taking. It’s also being more aware of when I know my stomach may not feel 100%.
Usually, around that time of the month, it can sometimes make symptoms appear. So, I’m more aware that during those few days I may need to be careful what I eat, take paracetamol, have a hot water bottle handy, and know when to rest. It’s also the same with my Crohn’s in the mornings, some mornings are better than others, and when I especially feel that it’s flaring, I pay close attention to diet and take things easy until it calms down.
A major trigger of my Crohn’s is stress, so when I become aware that I’m feeling either anxious or stressed, I take some time out to do the things that help to relieve it. I’ve found that when I become anxious, so does my stomach.
Not to let it take over
Sometimes this can definitely be easier said than done. Yes, I’m still mindful of what things can aggravate my Crohn’s and that sometimes it may take me longer to do something or if I have to stop and have a rest, but it’s so important to not let your diagnosis take over and to remember that you can still do the things you love, even if it may look a little different to how you did those things before.
When I was still gigging a couple of years back, playing the drums, this can be quite strenuous, so I found that I just had to be more mindful of drinking enough and staying hydrated, making sure that I wore comfy clothes to play in, resting in between sets and making sure that I didn’t overdo it. My bandmates were completely supportive and made sure that I was OK. They knew all about my diagnosis and helped in any way they could at making sure I was comfortable throughout the gig.
Key points from this post
- Everybody’s Crohn’s Disease journey is different: share in other people’s journeys, but don’t fall into the comparison trap.
- Don’t be disheartened if it takes a lot of trial and error to discover what works for you.
- Learn to listen to your body, and get to know when you need to look after yourself and rest.
- Share your journey with others so they can help and support you; don’t be embarrassed asking for help.
- Crohn’s Disease can be in the car with you, but it doesn’t have to be the driver; you can still enjoy the things you want to do in life, even if you have to adapt a bit.
My faith helps me so much through having a chronic illness and living with Crohn’s Disease. Through time spent with God, prayer, and reading my Bible, helps a lot. Through God, I am strengthened and I find peace and healing during those tough times.
If you have recently been diagnosed with Crohn’s Disease, or have had Crohn’s for a long time, or if you are currently in the process of a diagnosis, I pray that through God you are strengthened, that through Him you will feel peace and comfort, and to know that no matter what, God is with you always. God has the power to heal, restore and give us hope. And in those tough moments, He is constantly with us. He is listening to our every word and comforting us when we let Him and surrender all, and give Him all of our burdens; all of the heavy loads that our weary bodies are carrying. As Jesus says in Matthew 11:28, “Come to me, all you who are weary and burdened, and I will give you rest.”
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