“What’s Up, Doc?”

posted in: Day In The Life, Sicky 22
You're fine.
You’re fine.

Moving to a new city means finding a new salon, a new grocery store, a new bank branch. For me, it also means finding new doctors. On my shopping list: GI, OB-GYN, primary care, anesthesiologist, and possibly a colorectal surgeon, but I was crossing my fingers that last one could wait. Looks like not.

It’s not that I want to have all these doctors. I’d like to have zero doctors (no offense to any physicians out there) but that’s not realistic for me. My case file is the size of an oak tree stump: I need people with stethoscopes in my life. And so I did some hunting and found a primary care doc I like and he has so far made good referrals to me.

On Wednesday, I saw my new GI. It was my second visit. He was wearing a bow-tie this time. If he had been wearing a bow-tie on my first visit as well, I might not like him as much as I do. But he is a man who clearly varies his bold neck-tie choices; this causes me to put more confidence into him as a physician. Sure, it’s solid reasoning.

Dr. L. is concerned about me. I’ve got some issues that aren’t going away since my last surgery in 2011. Sometimes they hang out off in the distance, sometimes they creep into the frame and cause real trouble, sometimes they come in and kill everything.

“Have you ever considered…” Dr. L. paused, and set down his pen. What he was about to say required full eye-contact.

“Have you ever considered going back to the ostomy?” he asked. He paused. “Choosing a permanent ostomy, I mean?”

I didn’t say anything. “Choosing” is not a word that has come into play much in the years since I was diagnosed with ulcerative colitis. Not in doctor’s offices.

“The troubles you have, they would go away with a permanent ostomy,” Dr. L. said. “It’s a big decision, I realize that. But…” I was staring at my feet. My feet were dirty because I live in New York City now and New York City is filthy and I was wearing sandals. My feet looked cute and filthy. I thought about how my sister and her fiance Jack went to Tokyo for New Year’s and Rebecca told me all about how in Tokyo, there are no garbage cans. Everyone packs their trash in little bags and throws everything away at home. Toyko compared to New York!

“I’m not sure I’m ready for…” I trailed off. “I don’t know.” My voice was a croak. The ostomy. Permanent. I thought I was done.

My throat felt tight and hot. Though my body is often weak and I live an inconvenient, painful, and senseless physical existence (as it relates to my guts) 80% of the time, the one thing I have going for me is that there is not, presently, a bag affixed to my abdomen that catches excrement that oozes out of a pulled-out piece of my intestine. I did have one of those bags and one of those pulled-out pieces of intestine for about three years, in total. Not great.

But what I deal with now is also not so great.

“Do you think,” asked Dr. L., “That your partner would be okay with something like that? Do you think he would be…understanding?”

My heart clenched. An inward moan. Yuri.

“I don’t know. I’m not quite ready for that, Doc,” I said. No crying, no crying. “He’d be wonderful, sure, but… I’m just not. He’s younger, you know, and I just, ah…” Tears were forming and I needed to stop the conversation immediately. “I’ll think about it.”

“Okay,” said Dr. L. with a kind smile. “I’d like you to see a colorectal surgeon about a treatment we can do for you in the meantime.” He then explained the treatment, and I was glad he did because it’s so awful, it got my mind off the ostomy. I could instead be horrified by what the surgeon will do to me (for me?) in a few week’s time. Much easier to focus on that and my filthy feet.

“Thanks, Doc,” I said, and got the surgeon’s name and number. “I like your bow-tie, by the way.”

“Thank you,” the doctor said, and went out the door. I hopped off the exam table, removed my paper gown, and got dressed to go back out into the city.

22 Responses

  1. Anne Carpenter
    | Reply

    Oh, Mary — I am so sorry that you’re facing such a difficult decision. I don’t know what else to say, but I wish you the best. Take care.

  2. Lorraine
    | Reply

    I have Crohns (age17) and have an ileostomy. I had no choice as the Crohns ate out my rectum. Very painful!! I didn’t want it either BUT when I woke up from the surgery I knew immediately I was cured. My husband which was my BF at the time said I looked like death going in and came out looking alive. I was alive, pain and sickness free. My hubby and I dated for two years after the ostomy and now we’ve been married 31. The ostomy didn’t matter to him. It does not affect being intimate! I was in my early 30’s when I got it and now 62! Pray about it. Please contact me if you have any questions.

  3. Andres
    | Reply

    Jeez, I’m sorry. If anyone can come out of this being awesome it’s you.

  4. Mary Lou Hutson
    | Reply

    Oh, honey. so sorry you are dealing with this. I had a temporary colostomy for a few months after a bout of peritonitis caused by a botched laser surgery in the female parts. It was better than dying but it was really, really hard. I do know that there are people with the permanent ostomy status who have figured out how to deal with it and live normal lives, with a lot less aggravation than others with Crohn’s or similar problems. But mostly I wish you did not have to consider any surgery right now and certainly not this one. Yikes. I don’t know you but I feel like I do, from your blog and your book (LOVE). I am going to put you on my prayer list right now.

  5. Amy
    | Reply

    I’m so sorry. As others have said, I too will be praying for you. God bless you.

  6. Megan Cullen
    | Reply

    Mary, I saw this article the other day, so I am sharing it with you here. The point being you are not alone in this, and it would be a horribly difficult decision. I know you will make the right decision for you, as this young woman has done.
    http://www.independent.ie/style/beauty/body/irish-women-should-be-proud-of-who-they-are-ostomy-or-not-says-model-posing-with-colostomy-bag-30411766.html

  7. Jan
    | Reply

    Oh, Dear Girl, I am so sorry you are going through this.
    There can be nothing worse than having to face the illness, than, I think, a bunch of advise-givers who haven’t got to face what you do. I have not, and I’m going to sound like the horrid advise giver!. But, if the need for the colostomy is not emergent, could that decision be made down the road, and just deal with what is before you right now? My girlfriend needed a knee replacement, but wasn’t ready. She asked when she would need it, and the surgeon said, “You’ll know”. Maybe that could be you. You’ll know.D
    I’m with Mary Lou, you are on the prayer chain, girl! And what lovely encouraging blog friends you have, who have had to face what is before you.

  8. Lisa E
    | Reply

    I’m so sorry to hear about your medical problems. Please know that we are thinking about you and wishing you all the best.

  9. emily calvo
    | Reply

    Mary, thanks for sharing. So sorry you have to deal with this. You deserve to be pain-free. You deserve to not have to make decisions like this. And, yet here you are. Sometimes life sucks. Here’s to your health and happiness, whichever way you “go.” I know…that was bad.

    • Mary Fons
      | Reply

      Love forever to sweet sweet Emily Calvo. (Auto correct wanted to put in “Dickinson” after your first name, Em. Works for me.) xo

  10. brenda
    | Reply

    I am so sorry. most of the time when I face something uncomfortable, I add some extra time for prayers for me. most of the time they are for others so I add my own issue to my prayer time. He really gives some great wisdom.
    God bless you and your decisions.

  11. Cruz
    | Reply

    So sorry that you have to confront this now. No new drugs for UC?

  12. Erin
    | Reply

    Oof. Not what you want to hear. I am so sorry, Mary. I suffer from UC as well and will keep you in my thoughts. I hope you feel better soon.

  13. Elaine
    | Reply

    Sending you lots of love and good thoughts.

  14. Karen
    | Reply

    Mary, picture yourself piled under lovingly made quilts (well, maybe not too many!) from all the quilters you love and support, while you’re facing this next heart rending decision. And maybe make some quilted (bow) ties for Dr. L so the next meeting with him seems more familiar!

  15. Sara T
    | Reply

    Mary, I’m so sorry to hear this news. My sister-in-law faced some the issues that you are going though and it was difficult to watch her suffer while there was nothing I could do to help. I will say that she decided to go with a permanent ostomy and doesn’t regret it. There are some issues of course, the unfortunate slip-ups, the “leaks”, the embarrassing moments that those of us who love her have learned to laugh off. If this is the path you choose to take, know that the people who love and support you will continue to do so. And those that don’t, don’t matter. Good luck.

  16. NanaV
    | Reply

    All the very best to you, Mary!
    You have guided me gently down a path of steadily increasing confidence as a novice quilter.
    I wish the same for you and your health care partners as you make this journey.
    Advances in treatment are made every day.
    You are in my thoughts and prayers!
    I hope you feel much better very soon.

  17. Cheryl
    | Reply

    I had an absolutely wonderful gyn when I lived in Manhattan…….sometime after I moved he went from St. Vincents to Beth Israel which is I think now Mount Sinai Beth Israel……if interested let me know. I’ll give you his name…….if I could have packed him up and taken him with me when I moved I would have, LOL!!!!! He listens……doesn’t rush you…….he’s wonderful !!

    • Cheryl
      | Reply

      Also a wonderful IM……..again, if interested let me know……..I always seemed to find the docs that were listed in top 10 lists etc……….I was good at doing the ‘search’ homework 🙂

  18. Susan Davies
    | Reply

    Hi Mary, your health problems are heart breaking to me. I can’t imagine someone being so sick. My husband has suffered from neuropathy for many years and taken powerful pain killers and just discovered that by eliminating eggs from his diet his pain went away. So wierd! All I can say about you is ” God, have mercy!”. I mean that sincerely and I hope that a miracle is in store for you. It sounds like your new doctor is a very compassionate and understanding man. What you’ve had to face is truly horrendous and inspires compassion in others. How could someone’s heart not go out to someone who has suffered so much? You should do everything you can that has a chance of helping you.

  19. Shirley Fass
    | Reply

    Geez Mary! I am so saddened by this. You are keeping a good frame of mind and sharing it with us. That is a good thing to do –you have a support group of us Quilty quirky friends to pray for you and do whatever else you would like us to do. I am sure Yuri will be ok with everything as I think he would want what is best for you. I have mixed connective tissue disease/Scleraderma and Psoriatic arthritis. When I met my husband and told him what I had and what he had to look forward to with me, I thought he would turn and run. My previous boyfriend did. Don said he didn’t care and would be there for me. And he has–and today is our 20th Wedding anniversary, and though I am struggling with my diseases right now he never complains. I think Yuri will be there for you too! Love ya kid!!

  20. Gay Barrett
    | Reply

    Mary, I am just adding my prayers and good thoughts to those already offered.

    I love the image Karen evoked about being covered with quilts from all of those that are thinking of you. Mine will be the wonky one with patchwork that kind of runs off the side because I was in a hurry to get it to you…just in case you were wondering. 😉

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