*This article is not to be taken as medical advice or as an expert piece on Crohn’s Disease. The purpose of this article is to provide a look into one particular person’s experience and journey with Crohn’s Disease.
Many times one person’s battles or struggles are invisible to the naked eye. When we don’t see what is happening on the inside we automatically assume that there is nothing wrong with a person. However, there are so many diseases and conditions that control our insides in a way that is hard for someone to understand who are looking from the outside.
This rings true of Crohn’s Disease and I have the honor to share Amanda’s story on how living with Crohn’s Disease is for her. What makes this story extra special for me is our family connection as she is my sister-in-law and my daughter’s Auntie.
So what exactly is Crohn’s Disease?
According to Crohn’s and Colitis Canada, Crohn’s disease and ulcerative colitis are diseases that inflame the lining of the GI (gastrointestinal) tract and disrupt your body’s ability to digest food, absorb nutrition and eliminate waste in a healthy manner.
The inflammation from Crohn’s can strike anywhere in the GI tract, from mouth to anus, but is usually located in the lower part of the small bowel and the upper end of the colon. Patched of inflammation are interspersed between healthy portions of the gut, and can penetrate the intestinal layers from inner to outer lining. Crohn’s can also affect the mesentery, which is the network of tissue that holds the small bowel to the abdomen and contains the main intestinal blood vessels and lymph glands.
The Road to the Crohn’s Diagnosis
The road to a diagnosis for Amanda was a long and painful one. At the age of 23 Amanda started to feel period like cramps that happened often after eating. At that time, doctors told her that it was Irritable Bowl Syndrome (IBS) and to watch what she ate. As time passed, the pains got worse and Amanda wasn’t sure if it was something more than the IBS and Endometriosis she was already diagnosed with. At the age of 25, Amanda was sent to do an internal and external ultrasound in which they could not see anything at the time. Therefore, Amanda ignored the pains for a long time and her anxiety made matters worse where she didn’t even want to leave the home.
At the age of 29, she came to the point where the pains were too difficult to endure and she went to her family doctor to advocate for herself to get further checked. The doctor stated that they would do a colonoscopy even though they do not normally do it for someone at her age. The result from the colonoscopy was not one that Amanda wasn’t prepared to hear. She was officially diagnosed with Moderate Crohn’s Disease. At this point the doctor did not prescribe any treatment or medication.
Not too long afterwards, the pains continued to worsen and another colonoscopy through the gastrologist specialist was done. From the colonoscopy it was evident that the Crohn’s was getting worse and a trial base medication was given.
Everyone experiences different symptoms and at different degrees. Amanda describes her symptoms as sharp and different pains everyday such as an intense pressure on the colon. The pains she feels causes her stomach to swell and when there is a blockage in her intestines then the pains she feels are much more severe. In addition, Amanda feels a lot of joint pain and random body and back pains. This is best described as if your body is constantly fighting the flu. With her body always fighting causes her to feel fatigue no matter how much sleep or rest Amanda tries to get.
Amanda also suffers from anxiety which affects her Crohn’s Disease and vice versa.
There is no cure for Crohn’s Disease and the medications available usually start off as a trial base as everyone reacts different to the treatments. Also for the stronger treatments the patient requires a lot of testing first to make sure that the patient can take it.
Currently Amanda takes one pill, one time a day (trial) to see how it works. In order to take this medication, she had to make sure she was up to date on all her vaccinations such as the flu and tetanus shot. In addition, she had to do tuberculosis tests, chest tests, x-rays and lots of blood work.
In one month time, she has to go back to check her red blood cells, irons, etc to make sure that the medication has not affected her. If everything checks out then the dosage can go up to 2 pills a day. Amanda also takes vitamins to help support her immune system since Crohn’s affects the immune system. People suffering of Crohn’s become very vulnerable to catch anything going around.
Life with Crohn’s Disease
Crohn’s Disease has taken control of Amanda’s life and she works around it. When planning a day out or if there is an event that she wants to attend, Amanda needs to do her research first. Amanda plans out every detail of her outing from the travel route to the facilities available at the location. This way she knows that there is a bathroom around if she needs it. At events Amanda cannot really enjoy a social drink as alcohol affects the disease too.
When Amanda does go out she uses side streets as it gives her better access to stop somewhere if she needs to. With Crohn’s she is limited on trying new things. “Your body changes. You can’t be active in sports or exercise as it physically hurts. Every day is a struggle and sometimes you have to force yourself to do what you need to,” says Amanda.
As a successful hairstylist she works from morning to evening and on her feet all day. To make sure that she isn’t rushing off to the bathroom in pain while serving her clients, she avoids eating all day which has a toll on her. With Crohn’s it has limited her on how far she can take her business. For example she can’t travel far distances due to Crohn’s and so many times she needs to turn down work outside of her salon. When she has a busy and big day at work she needs to prep the night before in order to do the next day’s work. Also continuing her education is also a struggle due to the limitations of Crohn’s.
Being freshly single, it is a struggle with Crohn’s Disease. Explaining the disease to someone new is difficult and of course can be embarrassing especially since you don’t really know them. Living with Crohn’s has not only made dating difficult but just any social interactions too.
What Not To Say To Someone With Crohn’s Disease
Sometimes people make comments (even with the best intentions) that are not appropriate to those suffering with diseases. Here are some common ones around Crohn’s that Amanda has heard.
“Wow, you lost a lot of weight.”
Any weight loss due to Crohn’s is not on purpose as a symptom of the disease is weight loss. With the weight loss, you are also losing muscle mass.
“What if you change your diet?”
There is no specific diet for Crohn’s Disease as your body could reject everything. Some foods could be worse than others and to different people suffering of Crohn’s Disease.
“Just eat healthier”
Crohn’s Disease has nothing to do with healthy or unhealthy eating. Amanda is only able to eat low FODMAP (FODMAPs are a collection of short chain carbohydrates and sugar alcohols found in foods naturally or as food additives. FODMAPs include fructose (when in excess of glucose), fructans, galacto-oligosaccharides (GOS), lactose and polyols (eg. sorbitol and mannitol) or low residue foods. Anything with extra fiber makes it worse for the person with Crohn’s Disease. When you are cooking you need to adjust according to your particular body. All foods are a trial and error as there are no set guidelines on Crohn’s. Also everyone’s triggers are different.
“You should have a baby as that will regulate your body?”
Amanda has personally decided to get tubal ligation to prevent pregnancy as she didn’t want to risk having a child with the complications of Crohn’s Disease. Being pregnant with Crohn’s Disease is extremely difficult especially if someone was having a flare up as there is nothing that can be done to help due to pregnancy. Also having a baby will not make Crohn’s go away as it is a life-long disease.
“Have you tried a Naturopath?”
Naturopathic treatment provides a systematic relief since there is no cure for Crohn’s Disease. Herbal medication could also interact with the prescribed medication. It would be like fanning a fire. Therefore, it is important to make sure that this method is discussed with your specialist before going forward with it.
Advice To Others Who Have Loved Ones With Crohn’s Disease
Amanda stresses that one piece of advice that she can give is to be patient with your loved one suffering with Crohn’s Disease. The reason being is that with Crohn’s plans can be changed quickly even if planned in advance. Therefore, Amanda says “Be prepared to be disappointed or to go places alone.” A flare up can happen at any time which affects plans. Amanda suggests to help your loved one by mapping things out and your route when you are planning an outing. “You get so use to your loved one’s Crohn’s that at times you end up thinking like them,” says Amanda.
In Amanda’s case anxiety and depression has come along with the territory of Crohn’s Disease and it is important to offer support to your loved one with this too.
Above all, you need to provide a lot of understanding and comforting to your loved one. Amanda states, “Let them know you are there for them. That’s all you can really do.”
Life As An Aunt With Crohn’s
Amanda is a loving aunt to my daughter, Nikki. She is always there for her and enjoys planning fun activities to do with her. Amanda says, “When I pick a place to take Nikki, it’s all around Crohn’s. I can only plan outings where someone else is with her just in case a flare up happens.” Amanda wishes that she could do so much more with Nikki and on her own. However due to Crohn’s she is unable to do much more with her niece and Amanda feels that it has caused a wedge into the relationship that she could have with her niece. “Having Crohn’s is like your mind is one person and your body is another,” said Amanda.
Amanda is a true warrior though as she puts Crohn’s aside as best as she can to play with her niece. The interactions between the two of them is always so beautiful to see as they do have so much fun with one another. Nikki loves her Auntie Amanda so much that she calls her, “My Manda.”
Crohn’s has also affected Amanda’s role as a pet owner as the walks can be cut short and require her to run back home due to her pains. What Amanda tries to do is avoid eating big meals before going out for walks.
Momma Braga’s Final Thoughts
Crohn’s Disease is a horrible invisible disease that changes many aspects of your daily living. Hopefully taking a look into Amanda’s life with Crohn’s provides some awareness of what one person may go through with this disease. It is also a great reminder that we should never assume or judge someone as we don’t know their back story.
Even though Amanda struggles and battles with Crohn’s every single day, she is still an amazing aunt in my books who goes beyond to make sure that Nikki knows how much she is loved by her.
If you would like to learn more about Crohn’s Disease please visit Crohn’s and Colitis.
Special thank you to Amanda for her time and sharing her story with all of us.
Until next time…Happy Parenting!
– Momma Braga