Today, on World IBS Day, I share Chelsea’s Stahl’s Story as part of the #IBelieveinyourStory campaign. Thank you, Chelsea, for bravely sharing your journey and while doing so, let others know they are not alone.
As a quick side note: please use the hashtag(s) #LetsTalkIBS, #IBSAwarenessDay or #WorldIBSDay on all your social platforms today. For every tweet, post, #hashtag today, April 19th, 10 cents will be donated to supporting research and education for IBS…and every penny helps!
Here’s Chelsea with her sweet pup.:)
“I remember the first severe flare up I ever had. I was 18 or 19 years old and on vacation in California with my friends. We were in LA doing some really awesome stuff when all of a sudden BAM! I’m in the fetal position in the car begging to go back to the hotel so I could lay down. Needless to say, it really put a damper on my time visiting there. After that, the flare ups were consistent, occurring once every couple of days. One night, I ended up on my floor in the fetal position for hours. Any movement and I felt like I was being stabbed a thousand times. I called my mom and we headed to the hospital. It was a long night and I got zero answers. Zero. Zilch. They checked my gallbladder and appendix. Nothing. So I was on my own. I was so angry. Angry that this was taking away from me enjoying my life. I learned about the Low FODMAP diet and went at it. By myself. I went on this extremely restricted diet and cut out almost every food. I ate the same 3 foods every. single. day. Why would I eat anything else if I’m just going to end up on my apartment floor in excruciating pain? I didn’t have any guidance, minimal resources and I was battling this invisible disease on my own. I never did the “reintroduction” phase of the FODMAP diet because I was petrified of what the result might be.
As I was also a college athlete at the time, it goes without saying that I lost a terrible amount of weight. IBS created a chain of problems and digestive distress and no one really understood what I was going through. Eventually, pain and isolation took over. For the next four years, it was doctors appointments after doctor appointments. Weeks, yes plural, of not going to the bathroom. I was full of s**t, literally!! And the doctors responses to this? “Oh you just have IBS.” “Maybe you should try miralax, metamucil, stool softeners, etc.” “Are you eating enough fiber?” Really? This is the only advice I get for being in the worst pain every time I put something in my mouth? Every doctor I went to it seemed like they didn’t have any knowledge on what IBS truly is. I got every test done that seemed possible. Endoscopy, colonoscopies (yes 2!), breath tests, blood tests, stool samples, allergy tests, ultrasounds, CT scans, anorectal manometry and bowel transit time tests. Then onto my OBGYN for more tests, including ultrasounds, bone density scans and a laparoscopy. Honestly I probably forgot a few in there. I even switched GI’s and saw a nutritionist over this period of time.
Can you guess what else all of this caused? STRESS ON TOP OF STRESS. Can you guess what doesn’t help digestive pain? Yup you guessed it, stress. One of the hardest things I had to do was cut back tremendously on my exercise. If you know me, you know that throughout my whole entire life I have been an athlete. I am ALWAYS active. Always have been, always will be. I played sports all the way up until I graduated college and I LOVED lifting weights and running. Heck, my job is one of the most physically demanding jobs and I absolutely love it. It was may way of relieving stress but I really had to take a step back for my own well being and health. Since I am not going to stop doing my job, I had to lay out my priorities. I decided to cut back on lifting weights and running but I continue to go to yoga daily as well as riding my horses. Luckily, over time (lots of time) I have learned how to manage my stress and what works for me without resorting to the gym or throwing on my running shoes. It is constantly trial and error. It takes time, patience, and of course support from others. It takes acknowledging the fact that what works for someone else, might not work for you and vice versa. IBS has taken a lot away from my younger years that I wish I could have back. IBS has caused me to be fearful of food because of how it might make me feel. This past year, I have started to open up about my experiences and allowed my loved ones in. I am allowing them to help and support me through the hardships I come across and realizing I cannot do this alone.
I have witnessed the growing awareness of IBS and other digestive disorders, as well as the research that has taken place over these years. I was there when information on this was at a minimum, when the low FODMAP diet was tucked away in the dark. Now I feel as it is my duty to share my story, to bring the light to these disorders. I will continue to raise awareness, knowledge and support for the ongoing research that will take place.”
It truly does take guts to talk about your guts.
Chelsea brings up some key points: find a GI doctor that doesn’t dismiss you and your diagnosis, “it’s NOT just IBS”, work with a dietitian to guide your nutritional plan (undernutrition can lead to further decline in the function of your GI tract) and recognize if food fears and stress are becoming bigger than you, and seek help for that too. It’s not easy having IBS, and fortunately there are GI psychologists that work with individuals with IBS to help with the stress and treatment of this condition. And, try not to suffer in silence…when possible, reach out to loved ones to help and support you.
Thanks again, Chelsea. xx
As another reminder, I will be participating in two upcoming Twitter chats on IBS:
Today, April 19th at 12 noon EST, I will be chatting on Twitter with Brigham and Women’s Hospital GI team, follow @BrighamGI and @katescarlata_RD and hashtag #BWHGIchat and another Twitter chat with @IFFGD, on April 24th at 12:30 EST along side patient advocate, Amber @EandEByAmber using hashtag, #DDHChat.
I hope you join in and ask questions about IBS!
7 replies on “Chelsea Stahl’s Story“
Great stories all. I’m 72 and only through the FODMAP method of eating I started last year on my own did I find relief after years of suffering since I was a youngster and not telling anyone out of embarrassment because doctors said it was all in my mind and used to give my mother a tonic for me that turned out to just be sugar water. It took a lot of alone research, trials with different foods, and a great GI doctor and nutritionist who really understood FODMAP and who guided me to feeling so great today. It is so wonderful to have a quiet gut! Kate, would you consider doing a public talk at the South County Hospital in RI? I know it would be very popular and my GI doc would help promote it. Also, have you considered FODMAP ambassadors to help spread the word about FODMAP to the general public. This could be like a support group besides the nutritionists and GI docs who do educate. Just suggestions. I am not on social media, and hope your talks can be found on more platforms besides Twitter and Instagram, but so happy here to have this opportunity to say thank you for all you do.
Thank you, Nan! Have your GI doctor contact me through my website: email@example.com. I do many talks–so it would just depend on the timing. I love the idea of FODMAP ambassadors. Let me think about how to execute! Thanks for your comment!
Chelsea, Kate & everyone else who suffers with this (including myself) I just honestly don’t understand WHY this continues to be a “mystery” disease. How can you eat something one time & be ok & then eat it again & your gut is tore up. Mine started with a stay in the hospital for over a week while on antibiotics 24/7 & then 2 more weeks at home till my body broke out in hives. Doctor took me off of them but my GI tract hasn’t been the same since. As Chelsea said the frustration of losing days of your life / weeks is beginning to wear tremendously on me. And as for travel, I’m lucky to be able to string 2 days together let alone be able to go away. Starting work with a dietician but after Chelsea’s story, hope of that working is diminishing. I hate sounding & feeling like a drama queen all the time…..it’s not the real me! My family & husband are extremely supportive but I feel like such a burden…
Debbie, I feel your frustration! But, I do see a change in IBS management and outcomes for patients. Years ago, we really had very little to offer patients. But, this is changing. Work with a GI team: dietitian, psychologist and forward thinking GI doctor, if you can…so you can feel like yourself again. And hives certainly could be a side effect of antibiotics–but discuss the role of mast cell activation syndrome too. Read this post to see if it make sense to your case.
Can you please refer a dietitian as I have tried 5 over the last 4 years that have not worked out and I spent several hundred dollars on each.
I am in Florida but can’t seem to find a good one who understands Fodmaps and IBS/SIBO.
Thank you! 🙂
Hi Kate, Sorry for the delay. Where are you in Florida?
I am in Clearwater FL and appreciate your help!
Comments are closed.