From day one we wanted to involve people from around the world, to share their experiences with IBD. Thanks to social media, we were contacted by DJ and former L.A Ink cast member Aubry Fisher in Los Angeles. We hatched a plan for an agony aunt style Q&A. So with that, we give the stage to Aubry to candidly answer your questions.
I want to start by thanking all of you for your questions. They are all great and I am going to answer all of them in this article. Crohn's Disease is a real pain in the ass, pun intended, so lets see if I can enlighten those who have it, those who have friends or family that are living with Crohn's and or those who are just interested in learning.
First question is "What treatment are you personally on?" I will start by saying I have been on so many, but as of right now, I am on Entyvio (vedolizumab). I am not very happy with it personally, as I have been on it for 6 months and I am experiencing a lot of weight gain, problems with constipation, and severe joint pain. I am also on a low dosage of Prednisone, for what seems to be the millionth time. I have been on Corticosteroids, I also take Protonix (pantoprazole) everyday for gastritis ( inflammation of the stomach). Many people think that if you have Crohn's, that it only affects your intestines, and that is so untrue. It is an autoimmune disease and effects your whole system. It can affect everything, from joints to muscles to your brain function and your immune system and ability to fight off the common cold, everything.
On to question two "What are the long term effects of Crohn's disease?" In the long term Crohn's can cause all kinds of problems, with the worst case of it actually leading to colon cancer. There is no current cure for Crohn's disease. Crohn's is a progressive disease, some people find a lot of relief in diet and surgery. Sometimes Crohn's can go into remission for years depending on who you are. Everyone and their Crohn's is different, the disease can also be anywhere in your digestive tract, all the way from your mouth to your anus. This is a bit of a tough question because everyone is so different, and there are also long term side effects that can worsen due to the long term effects of medication, so it is hard to give a detailed list.
Question three relates to "What are the first signs of my Crohn's disease?" Also a tough question, I was diagnosed at 17 years of age, but believed to have had Crohn's my whole life. When I was young, I used to have a nervous stomach, then IBS. I was in the hospital several times when I was young with appendicitis, which always cleared up right before surgery (Hahaha!) Had to laugh at that one, I almost had my appendix taken out three times, it is now gone and I never had appendicitis. They took it out when I had my bowel resection surgery. Thank God I don't have to worry about that one ever again. The pain of Crohn's is very similar to a bursting appendix. I ended up getting diagnosed when I was experiencing acute diarrhoea, with intense pain for days on end. I could not leave the toilet. It was pretty bad, I knew and my family knew something was wrong or I was really nervous? Hahahaha....
I love this next question, "Do I get anxiety when I travel?" Yes I do, I get anxiety when I am in a flare up everywhere I go. I suffer from severe anxiety due to this awful disease. I need to know where all bathrooms and hospitals are, and during traffic time, I do not travel far. This disease unfortunately has no warning signs. One minute you are fine, the next you are struggling and running to make it to the bathroom on time before you have an accident, which also unfortunately can be a common occurrence for people with Crohn's. Now keep in mind again that everyone has different symptoms. Some people do not get diarrhoea at all. Some people get severe constipation with pain and cannot go at all. Some people get only abdominal pain with normal bowel movements. I am telling you this so that you know that not everyone with Crohn's has anxiety about traveling and some travel just fine.
My last question is about diet, "Have you ever seen a Dietician?" I have seen a Dietician and so many people have the diet remedy. My doctor currently wants me on the SCD diet (Specific Carbohydrate Diet), but after reading about it, and knowing that I am allergic to dairy, which happens to be a lot of what you can eat on the diet, I chose not to do it. I am limited on food as it is, and I need to like the food I eat. That diet is very limiting, and I do not think I could do it to be honest, I plain old do not want to. As for my diet right now, I have no lactose, I do not eat a lot of raw veggies either. I do have salads but not a ton of raw vegetables. When you have Crohn's disease you learn real fast what foods set you off, and which foods you can tolerate.
I hope you enjoy this first Q&A on 'Ask Aubry'? I hope you will continue to write in and ask me questions. They can be any questions, questions about me, or just general disease questions no matter how embarrassing, how graphic. I will do my best to answer them as best as I can.
Thank you for reading and look forward to hearing from you.
Disclaimer: Remember these are just Aubry's views, always seek medical advice from a medical professional or doctor, in relation to your health, and your medical condition, we do not claim to be experts and are only giving accounts of Aubry's personal experiences.
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