Let’s recap.
In telling the story of my nervous breakdown at age 39, I’ve so far detailed in two separate posts the death of my dog and the breakup of my relationship. There are three more disasters to share with you because there were three more blows coming for me before the major depression reached its most gruesome stage.
Tonight, the third disaster, but a heads-up for next week: I’ll combine the other two into one last post about the wind-up. I want to get to the climax and the denouement and then I want to go back to writing about dryer lint. Those were the good old days.
All right, let’s do this. Let’s talk about my guts.
Some people get colonoscopies. People with colon disease get them a lot, maybe every couple of years. Every two years, I have to get a pouchoscopy because I don’t have a colon. Instead of a colon, I have a medically fashioned thing called a j-pouch, and if you’re interested in reading the story of my chronic illness, click the “Sicky” category and you can enjoy all that wacky content.
My insurance was canceled in 2017 (a post about that is to be found in the “Sicky” category, in fact) and the cancellation meant I could no longer see my doctors and surgeons. Because of grad school and work, it took me a long time to getting around to finding new doctors. Dragging my feet on this was bad … since I was due for a pouchoscopy. The pouchoscopy is done frequently with gimps like me because we’re at a higher risk for various bowel cancers than other folks. It’s also seriously important to check for inflammation inside my funky new body parts because inflammation could be a sign of pouchitis, which is basically Ulcerative Colitis (UC) of the j-pouch. Which would suck.
And then there’s this other thing that a pouchoscopy can reveal. A pouchoscopy can tell the doctor if you — in this case, me — might be exhibiting signs of Crohn’s Disease.
Let’s see how quick I can do this: If you have UC, it means your large intestine is eating itself alive but your small intestine is fine. With UC, you can have your entire colon removed, get an ostomy, and get a j-pouch and everything blows and it’s awful forever, but whatever. You’ve still got your small intestine and that’s something, at least.
If you have Crohn’s Disease, your large and small intestine are eating themselves alive. Crohn’s peeps undergo (often over and over and over) surgeries called “resectionings”. A resection is where a surgeon takes out a too-inflamed, too-ulcerated-to-save piece of your guts. There’s no total colectomy with Crohn’s like there is with UC, because Crohn’s folks need all the entrails they can get. Any piece could fail at any time, you know?
If a person like me, a person with zero large intestine (aka, colon) is diagnosed with Crohn’s Disease, this is bad. This is the worst thing. This is the hell thing. This is the thing that wakes me up at night, the thing that makes me bite my cuticles till they bleed. If I am diagnosed with Crohn’s — whether it manifested after all my other surgeries or if I was misdiagnosed 10 years ago, doesn’t matter — then I will eventually have to undergo resectionings.
If you take away enough small intestine because you have no large intestine to take from you will eventually run out of intestine. If you run out of intestine, you can still live. But you can’t eat. You’re fed intravenously. Forever. And because you no longer sh*t, they sew up your butt. It sounds sort of funny except that it isn’t funny.
When I walk into a hospital or a GI doctor’s office, I experience PTSD from all the needles and bags and accidents and procedures and trauma and despair that I’ve known in the last decade — and that’s just when I walk in. If I’m in the doctor’s office and my doctor looks concerned about lab results or looks concerned about what I’m telling her about how I’ve been feeling, I tremble and shake. I also begin to stutter? When I’m in the GI doc’s office and things get out of hand, it’s true: I can’t get my mouth to say words. It’s weird. It’s frightening. When I have to get a pouchoscopy scheduled, I just … I don’t want to exist in my head. That’s how bad it feels. Basically, going to see my GI doctor is one of the most awful things that can happen to me, even when I get a clean (for me) bill of health.
Guess when I had an appointment to see my GI doctor? Sometime in early January, maybe? Yeah, after my dog and my boyfriend disappeared, and right before I got denied for a home loan and right before a huge fight with my family. It was sorta right in the middle of all that. And remember: This appointment to see my GI doctor was an appointment to see a new GI doctor, because I lost my insurance. New smells. New hospitals. New travel times.
The new doctor needed me to go through my medical history there in her office. From the first words, I could feel the stutter was gonna happen. My eyes started pouring hot water. Trying to “get it together” made it worse. The doctor was patient, but she needed the info in order to help me. By the time I got to the end of the story, which concluded with weird symptoms I told her I’d been having for several months, I was … not good.
“I’m concerned, with what you’re telling me about your symptoms,” she said, after clackity-clacking on her keyboard some more. She looked grave. “We need to do the pouchoscopy you should’ve had six months ago. I’m concerned about Crohn’s Disease, from what you’ve been telling — ”
And I don’t remember what came after that. Wait, I do remember: The doctor told me to go upstairs to get my blood drawn at the lab and she’d follow up with me about scheduling the pouchoscopy “as soon as possible.” I nodded and shook her hand. With a kind of fuzzy, hysterical static sound in my brain and behind my eyes, I took the paper. I went up to the lab. I got to the door. My legs didn’t work. I turned around. I left the hospital. I nearly threw up in the Uber.
All I could think of as I slumped against the car door was feeding tubes.
When I got to my house, I went up to my apartment. I didn’t know that I wouldn’t leave for a while.
Darlene
I feel so sad and helpless. All I can do is pray my dear.
You are a Awesome, Stunning, magnificent, incredible genius, talented and beautiful lady. We Loved watching you on Fons and Porter. My husband adored you too. It was so fun watching you and such a cute smile and dimples. All we can do is pray we know God Cares and Jesus loves you too. We all love you and care too my dear.
Jo
My heart is breaking for you. I want to hold you and tell you it will get better
Ursula O'Sullivan
Mary, sending you a big hug and wishing you better health. It breaks my heart to read this. You have gone through so much and it continues…
I am blessed with good health but have suffered terrible loss in my life.
Life is continuous change and hopefully that time and change will bring you to a better place.
Sometimes we imagine the worst but the reality is better. So…don’t lose hope. Your health can improve.
Love from Ireland xoxo
Penny
Speechless is my first thought followed by thankfulness you survived. I will always be your friend. Message me when you are ready for a road trip. Philip is invited too.
Dee
LOVE❤️
Gisela
You are in my prayers my son had his large intestine removed, had a reversal but still has issues with his stoma.
Gerrilyn
Your articles are so open, you are brave. You are helping people that think they are alone. It’s funny, from the outside looking in, people who look as though they are living”the dream”. No person has it all. I’m so glad you are getting better. Best wishes
Nancy P
Wow. What can we say to that piece of your story.
I didn’t realize that’s what happens with Crohn’s Disease. I’ve never read up on it. I have a cousin with Crohn’s Disease. I know she was really sick when first diagnosed. But she seems to be dealing with it well.
I was diagnosed about 5 years ago with Parkinson’s Disease. That’s a slow deterioration of your body as well, so I’d have to say that I know some of what you’re talking about. But not nearly as much hit me as you had all at the same time. In my situation, my husband and all three of my kids have been great and very supportive.
I’m sorry for your losses, Mary. All I can say is “Hang in there, girlfriend!!!
Karen
Oh my, I ache for you my dear. My husband went through similar trauma 20 years ago but with a much better outcome. And our daughter has chronic health problems but much more manageable than yours. So I only know secondhand the fear, trembling, and absolute denial in your mind when you hear the doctor outside the room reading your chart and sighing and walking away to order more tests before coming in with bad news. You are entirely within your rights to have a nervous breakdown. BUT it is over, and you are on your way UP! Sending all my love and good thoughts.
Susan K
You are the bravest person I know. To document this most horrible time in your life and to share it. Gentle hugs to you Mary.
Donna
I just want to go with you to all your appointments with labs docs and procedures -oscopies. To Support you! You need this!!!
My (unsolicited) advice is to stop trying to be such a Big Girl when you are facing these extremely tough things. Everyone needs support. You have so many friends and close family who would love to do this for and with you. Love and Prayers Mary
S H
Just hugs, Giant Hugs, arms around you tight hugs. You WILL make it beyond this, Honey. We are far stronger than we know, in total, even if sometimes we completely drop the ball. And dropping the ball is necessary and fine; sometimes it is healthy for awhile. Let the tears fall, the shoulders droop and feel the love coming to you from me and wherever else.
Jan Curtaz
All I can say is, “Hugs from Sacramento”. I will continue to pray for you.
Liz Sonnenfeld
Mary, your story reads like fiction that you can’t put down, even though it’s so sad…. But your story is not fiction and for you it’s life…. I am so sorry. I’ve met you twice and you are a wonderful and very talented girl (well, woman but girl to me).
I had my blood drawn today (routine, annual) and the nurse was new and couldn’t find my vain in both arms. I cried and now I am thinking to myself how silly I was.
Soon you’ll have a puppy to love and things will be good again.
Thinking of you ❤️
Pam Williams
Sending you love and support to use as collateral when you run out. This love and support does not have an am expiration date.
Kathryn Darnell
Severe depression is like constant bile in my throat. Nothing tastes good, open my mouth and the air around me is fouled. Deep breath and time, just time. So Mary, here’s to a glass of 7-up (I swish and spit out a lot on dark days) and a fresh day, a glance at a blue sky or a sunset. Anything lovely that God made so we can say a quiet ‘Thank you’ and take a couple more steps. Been there sister and used cases of 7-up!
Paulette
Oh Mary. You need lots of prayers coming your way. No one should have to go through that. I hope you can get the help you need. Hugs
Sue brown
Love to you!!
Bob Collis
Hugs, Mary. Good thoughts, and nightly prayers. I look forward to things being better for you!
Michael
You are still here! You are still Mary Fons! Look in the mirror and apply that RED shade lipstick that you wear, its beautiful on you.
Judith Coates
When we first found out of an illness of our youngest we hit devastation and then a
dear friend said “when life gives you lemons – make lemonade”. This became my goal.
Your lemonade can be all the wonderful followers you have who really care about you and what is happening with you. Do not leave us in the dark because we are there and
will be there as you need us to be.
Mary Ann
All the gold stars for how you manage to share these struggles! And careful hugs too.
kari merkel
you sweet baby! I would give you a big hug and some chicken noodle soup and a nice warm blanket . You are so loved, my dear!
Diane
You are a GREAT writer….this is your thing…Sharing your story is a brave thing…sending you love
Peggy Barcelona
Please don’t wait so long to tell us the next part, I really need to know everything came out ok with you
Kim Landry
Oh Mary. This writing contains the breaking. I heard it and I’m left feeling kind of dizzy and a little nauseated. You are a really good writer, I am so sad that this story is your story. Today I wish you were a fiction writer. I am glad that you are writing. Writing and sharing your life with your friends and fans is good medicine. We love you, the good, bad and ugly. We will lift you in spirit. Peace-
Kim
Marge S
I get it Mary – but know you’re not alone. I don’t have intestine issues but I have bone issues. Every time I trip, bump into something or fall I get aches and pains and they may be cracks or worse broken bones. The complete fear that comes over me and consumes my every thought is overwhelming. And when you have a chronic illness you just count the hours or days to the next test and the final decision – are you in deep trouble this time or is it a bump in the road.
Hang in there – better days.
Debbie Randle
Mary I wondered what happened to you. I loved the relationship you had wity your mom. So so sorry to hear about your health problems and your losses. You are brave to post all this but it sounds like this a step toward your healing process. Take one step at a time and know you are loved by all of us. I will keep praying for you.
Cindy mizer
Poor sweet child I’m so sorry for your pain and fear.
Donna
Your challenges and your bravery are mind-blowing. I am humbled by your honesty.
Judy Sturm
I’m so sorry about all you are going through. My granddaughter is 25 and trying to complete a Ph.D. in physical therapy. She has Crohn’s, and she has no colon. She’s been to hell and back. She is tough and a fighter. I could not do what she is doing. My thoughts are with you. Hang in there. You’re a fighter too!
Tracy
Oh my! My heart aches for you, sending kind hugs and thoughts to you. I know a little bit of it, have had to have a section of stomach removed. It never gets “all better”, just sometimes not as bad. Stay strong and positive!
Martha Bilski
Sorry for your woes. I have been thinking of you and hoping for the best possible outcome.
Lynn lowe
Well damn girlfriend.
Sally Murray
This is only bearable because we know there is a light at the end of the tunnel, there will b e a pet friendly place to live and there will be Phillip Larkin. I’m so sorry for your troubles, a s bad as your original guy problems before I ‘knew’ you when you joined your mom at Love of Quilting. Dear gitl, I’m so sorry for your pain. Know that we love you and missed you while you turned inward and we are so glad that you are back. A fellow lover of 19th Century conversation prints and 40s novelties. I still buy ever Small Wonder I see even though I have yards and yards of them! Where you able to grab some ‘carriage and dog’ from El’s Homestead? If not, I can share. The line was designed from my antique quilt top from 1880s…has 30 odd conversation prints. Wish they had all been printed!
Sally Murray
Not “guy” problems, but problems! I hate autocorrect
Christine Ricart
Sending love! You are in our hearts!
Sue Kelly
Mary, Your witty observations bring moments of joy to more people than you will ever know. Please know that you are loved. It’s inspirational to see that you’ve come so far in spite of so much adversity in your short life. Continue to believe in yourself. Sue
quiltmom Anna
Mary, I am hoping that you are feeling stronger each and every day . May you be surrounded by the caring supportive hands of others as you heal. Sending you positive healing thoughts and prayers. Regards from Western Canada, Anna
Carol
Come to Hershey, PA for “work”. Have a chocolate spa. Yes, you can really soak in chocolate here. Then come and see us at the hospital for a 2nd opinion. Then go to Lancaster for some quilt therapy. I would be happy to show you around.
Sarah Ann Smith
When I read this, I have NO IDEA how you managed to get to Denver to tape on the Quilt Show and function! HUGS, Sarah
Karen
My mother and brother had Crohn’s. Diagnosed in 30s. Both had resections. Mother lived to be 95 and brother 83. It is not the end of the world, but serious. My son has since been diagnosed in his 30s and first resection in his 40s is so thrilled to be able to eat whatever he wants without writhing on the floor or spending much time in close relationship with the toilet.
Bless you. You will prevail. Modern meds do help. You can do this. Too many of us depend on your sense of humor. We love you.