Your Invisible illness(es):
Intestinal Dysmotility (is the term used to describe a variety of symptoms that occur when the gut does not work properly at moving its contents along). I experience sometimes CIPO which is chronic intestinal pseudo obstruction.
Gastroparesis (is a disease in which the stomach cannot empty itself of food in a normal fashion).
Explain about your journey and how long a diagnosis took:
I was diagnosed aged 17 (20 years ago).
I got sick starting at age 17. My digestive tract was starting to slow down and feel as though it was paralyzing. Overnight I couldn’t take in food anymore …not even one bite, without being so incredibly full and sick. I felt I was suffocating, I rapidly lost weight. I was told I had an “eating disorder”, it was in my “head”, “I’m too emotional” etc. I was finally diagnosed with Gastroparesis which is delayed gastric emptying. I left high school to home school as I was too sick to keep up. I was put on medication to help make my stomach muscles move. These medications are not perfected, and I still struggled. At the same time my colon was slowing down. I had the beginning of colonic inertia. I was no longer able to have bowel movements.
By 17 I was on prescription laxatives. I was told to change my diet, exercise, take supplements etc. I did all the above and it only made things worse and did not work. I was on every trial for new motility medication out there plus over the counter enemas. I did not want to abuse these options so I would often let myself go up to a month with no bowel movement until I was in the hospital. I had periods of time where I was able to manage with medications for my stomach and colon, but I lived very small. Never a day out of physical suffering trying to manipulate my body to work…sometimes it gets hard to just swallow because of the Gastroparesis.
I went 20 years like this. I failed every colon prep and had to get colonics and those were so painful! I didn’t understand how people do them for pleasure- I would cry on the table in pain! My last medication trial for my colon, I failed and it made me pass out and I hit my head on the toilet as I fell to the ground and awoke in a puddle of sweat. Enough was enough! I was emaciated!
I quit my job as a Vet Tech. I had a full colectomy and they attached my small intestine to my rectum assuming my rectum and small bowel were ok. My colon in tests was found to have little to no motility and it was very twisty and smashing up into my ribs. After the Colectomy, for two months I had no bowel movements and was back on laxatives and excruciating pain. I was in such a dark place I didn’t want to go on. Xray’s and MRI’s came back normal. I had my colon out …how was this possible that I’m in the same position?? My Doctor pushed me away for two months. The ER (A&E) pushed me away. Until finally one doctor thought he saw something. I kept advocating!
I went into emergency surgery the next week, a whole two months of pleading that something was wrong and they finally validated me! My rectum where the bowel was attached had kinked and was tipping over , my bowel fell into my pelvis and it fell so far I had an internal hernia and my intestine was being smashed between my rectum and sacrum. Plus adhesions. My rectum had redundancy (it was not useful) like my colon was redundant. They removed the part of my rectum that was redundant and saved some that they said was ok. They gave me a temporary loop ileostomy to let my rectum heal. Three weeks after I had an intussusception (a condition in which one segment of intestine “telescopes” inside of another, causing an intestinal obstruction). The worst pain I’ve ever experienced in my life… I wanted to be put out I was suffering so immensely! My small bowel telescoped inside itself which is a major Bowel obstruction. I’ve had dysmotility, pseudo obstructions and blockages in my bowel since then and I’m awaiting further opinions on ostomy reversal. I’m on IV nutrition called TPN every day as I cannot eat food consistently without having problems and IV hydration. I’ve had two bouts of sepsis since then as well and that’s TOUGH to recover from!
What are your symptoms?
Abdominal pain, pressure, bloating, cramping, pseudo obstructions, blockages, nausea ,chest pain, occasional vomiting, difficulty eating and drinking, early fullness, Fibromyalgia, low blood pressure, dizziness and weight loss.
What does invisible illness mean to you?
Invisible illness means to me being in the dark a lot but being SO BRAVE.
Has your understanding of an Invisible illness changed over time?
It has changed as I’ve been more outspoken.
I went a long time giving up and just living in fear knowing that the worst might happen if I didn’t get the right help and I realized that the more invisible the louder you have to be. Also that there are people out there with chronic illness that are in remission, their symptoms or are in a bad flare and know how to take care of it and it might seem like they are ok but they are being brave warriors too…like my sister who has ulcerative colitis.
The worst part of having an invisible illness?
The loneliness, assumptions and the work you have to do to get the help you need. It becomes a full-time job.
The best part of having an invisible illness?
I am so good at advocating. I have an inner strength that is there because it’s been exercised for years of having to be strong from illness and Complex -PTSD (my other invisible illness that I choose to not express now). I have always been a very empathic person that its overwhelming at times, even as a little girl I felt it but I think it’s a super power now. I like to put my things aside and show up and listen for others because I know that is what I’ve needed.
What do you feel is the biggest misconception?
That we are fine… We are fine because maybe we are not in a bad moment, flare, in the hospital, have a tube coming out or something else visible. That we just need to be stronger. It’s simple…Not all disabilities are visible, and some disabilities have phases.
Hopes for the future?
For me and the motility community I hope that medicine makes strides. These disorders are rarely idiopathic but can be. It is very complex and frustrating, even for doctors. For the invisible illness community and I, I hope for more awareness, understanding and advocacy. I hope for patients to get the care they need and to be treated with the dignity and respect they deserve. I hope for better treatment for patients from Doctors, family, friends and strangers. I hope a day comes that advocating for yourself isn’t so hard, that it makes you more sick.
(Note from Nat: A huge thank you to the beautiful Rozzie who has provided me with so much information and insight into her invisible illness! Sending you love and light, always xox)
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