For folks who might be new to PaperGirl and/or my intestinal odyssey, I thought it would be appropriate to offer a brief timeline of events. I write it down less out of a desire to, you know, write it down, than to inform those who without it might draw incorrect conclusions about the trajectory of my illness or fail to see the pretty extreme case it represents. Most people do not experience the trouble I had with all this. If you thought what has happened to/with/at me is what happens to anyone with UC, you would be (blessedly) wrong, even though there’s no good way to have this intestine-chewing chronic condition.
It’s remarkable to me how many people, upon learning that I have experience (!) with ulcerative colitis, will say, “Oh, dear. My [family member, kid, self] has had Crohn’s since 2006; I know just what you’re going through.” Too many people say this. [EDITOR’S NOTE: Oof, that came off wrong, I think. I meant that “too many people have these diseases,” not that too many people offer their empathy! Heavens!]
Warning: I’m not going to mince words, surgeries, or diagnoses. Again, in the interest of providing information for those who are perhaps facing a diagnosis, or for those who care to know more about a worst-case scenario, I’ll give you the straight dope on what’s happened to me up to the present day. It’s like I’m donating my body to science without having to die! Yet!
August 2008 – Over the course of several months, the weird symptoms I had experienced on and off for years grow grim: I am passing quantities of blood and what seem to be chunks of tissue. The month or so before I go to Mayo Clinic, I am using the toilet 30 times a day.
September 27th, 2008 – My wedding day. No symptoms. Blissfully happy.
October 20th – Mayo Clinic. Drive through the night. Doc takes one look at me and sends me to ER. I am put on heavy steroids and NPO (“nothing by mouth,” not even water, for fear one sip will burst my colon) for seven straight days; this does exactly nothing to my colon, which is “in shreds,” as one doctor put it. I am diagnosed with advanced ulcerative colitis.
October 15th-ish – Surgeons tell me I have two options but really only one option, since the steroids are not working: J-pouch surgery. This is where they remove your entire large intestine and fashion a new plumbing system for you out of your small intestine, called a “j-pouch.” While this new plumbing heals inside your body cavity, you pass waste through a temporary ileostomy, or stoma. A piece of my small intestine will come out of my tummy and I’ll wear a bag, in other words. I “choose” the surgery. I ask when it will be. “Tomorrow,” says the surgeon, and I sign on the dotted line. It snows in Minnesota that night.
October 20th – Surgery. I wake up screaming. Insufficient anesthesia.
October 20th-November 20-something – Everything that can go wrong has gone wrong. I have abscesses, infections. There is a leak in the new plumbing. This is not typical. An NG tube is placed. A PICC line is placed. Many IR drains are placed. My insides are “bathed in pus,” as a later doctor would say. TPN (feeding tube.) Thirty-pound weight loss. Horror show, fun-house-sized syringes extract fluid and pus from my abdomen. Stoma separation occurs, which means my tummy pulls away from my stoma and there’s an infected moat around the thing. My then-husband and mother are living at the hospital, basically. I am on a Dilaudid pain pump and live in a world of stoned dread interspersed by visits from residents with bad news. Mom asks lead surgeon if I’ll die. “I don’t think so,” surgeon replies.
November ’08 – Home to Iowa. Full-time care needed. Mom flushes drains daily. Husband gives Heparin shots. Everyone is depressed.
November ’08 – February? March ’09? – Skeletal. Sick. Why am I not getting better? Trips to Rochester, MN through ice and snow. I remember very little, then or now, of this time.
Spring ’09 – Return to Chicago. Ditch Mayo for Northwestern. Infectious Disease team finally cures the bacteria swimming in my gut. I begin to eat again. Stoma healed.
…and I actually have to pause here because this is when the really bad stuff happens and I’m a little exhausted from recounting this much, frankly.
Second half of timeline tomorrow, if you dare. Get some cake, maybe!
My response to the “my (fill in the blank) has Crohn’s” is always to ask if they too have lost track of the number of times they’ve been hospitalized. Have they ever had an open hole in their abdomen for six months leaking crud as their surgeon put it? Have they had the joy of having their intestines perforate? There’s really nothing quite like that one. And are they still pooping twenty times a day? Have they bought stock in Charmin?
And if one more person tells me that I need to eat more fruits and veggies I might slug them. I haven’t been able to eat them in seven years. Or dairy. But your friend has IBS and all she had to do was change her diet? IBS – not the same thing as IBD. IBD = life threatening. IBS – not so much.
I’d say don’t get me started, but you did! I’m hoping things get better for you, and whatever you decide (not an easy decision by any means) you’ll improve your quality of life. Hang in there, Paper Girl!
Boy oh boy oh boy……you have my full attention Mary…..
I am a cancer SURVIVOR because of the hard ” choices” I had to make.
I hear you…..your story is so important….xo E
Thank you for sharing your story. This gives great directions for prayers. I look forward to the rest of the story.. I love your writing style.
Oh Mary, I had no idea you have been thru so much hell. it’s amazing how much the human body can take. I will pray for you. I am such a fan of your creativity and quirky personality. Thank you for being brutally honest. I pray that God will give you a complete healing and peace.
I just sat here and said, “Oh My God” out loud. Geez kid, what an incredible journey you are on!!! As I watch you and your wonderful mom on television, I would never even guess that you had been (sometimes ARE) that ill. I wish for so much good for you! Peace and love to you, my fellow quilter. I think you are FANTASTIC! Peace and love, peace and love,, peace and love.
Thanks to all for the kind words; hug a Crohn’s or Colitis Kid today!
I don’t really have the words but I did want to give you this… (((HUGS))))
I, too, have had to give a timeline to help people understand just what is happening. I know it’s not for pity, and I know how exhausting it is. You are loved, and prayed for.
My thoughts and prayers are with you as you journey with your intestinal troubles and towards health. Hugs for you! Give Yuri a big hug for me also. Being a support person is tough too!
Wow… Another incredible reminder not to take health for granted. Stay strong. I know you have a great support system, so lean on them! Good luck with any decision that you make.
You have been missed from the show, but oh, my goodness!!!i am so sorry for your health issues. I will be praying for you to be restored to health & happiness. Grace & Peace be with you.
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I knew you had health problems, but I had no idea what they were. I’m so very sorry that you had to go through all of this. As much as is possible, I’m sending good thoughts your ways. And I can tell you that I am a big fan. Love your magazine, your show (with and without your mom), your videos, etc. You have accomplished so much in your life.