My post from a few days ago was a real cliffhanger — and then I kept you cliff-hanging. I’m sorry about that. There are a lot of spinning plates right now and sometimes I have to set a plate on the shelf for a second and rest my … what, fingertips? My plate-spinning stick? How does plate-spinning really work? Any actual plate-spinners out there, leave your remarks in the comments.
Also, this post has been incredibly hard to write for reasons that will soon be obvious. I’ve been dragging my feet.
Where was I, before time was up? Oh, right: Raw almonds for breakfast. If you haven’t read Part I, do that and then brace yourself for some extremely unpleasant (and personal) anatomic details.
The colon, also known as the large intestine, is a kind of shop vac: It sucks up the fluid from what you eat and drink so that the body can make solid waste. Then it holds onto … all that for a period of time and then, you know, you get rid of it. My shop vac was removed 10 years ago because it was, in the words of the surgeon who really messed up my surgery, “completely gone on the left side.”
What this means is that I don’t produce solid waste and never will again. I can eat things that are better for my condition and things that are way worse for it, but to go through a list of good vs. bad foods is a pointless exercise in many respects; what works only sometimes works and what doesn’t work for awhile suddenly isn’t so bad. But almonds are bad, full-stop. Which brings us to the second dignity-sucking feature of this tale and honestly, part of the reason I delayed in getting back to it. Let’s talk about fissures.
A fissure is a tiny, usually thread-thin crack between one thing and another. A fissure is relatively (very) narrow and not jagged; it’s not a rip or a tear, exactly. You can see fissures in rocks. Hairline fractures in bones would be a good visual. Fissures can happen in body tissue, too, and when they happen, it is bad. I had a fissure at the tail (!) end of my digestive tract and that is as much as I’ll tell you in terms of anatomy because we all know what I’m talking about.
My fissure arrived in late 2013 and was diagnosed as “acute” and “chronic”. Because I no longer have my shop vac, remember, I go to the bathroom a lot during the day and through night. Way more than most people, even with my J-pouch surgeries. If you have a fissure where I had one, the last, last, last thing on the planet you want to do is go to the bathroom. And at that time, because I didn’t know I was allergic (or had a reaction to) almonds, I was typically going 8-9 times a day and as many times through the night.
The pain of my condition bent my mind. It eviscerated my will, my fortitude, my spiritual condition. I squalled like a newborn. I babbled incoherently to no one as I pep-talked myself into going back to the guillotine, aka bathroom, over and over. The cramps were terrible. I had to go. And when I went, only an acidic trickle would come and I clawed my thighs until they were scraped and raw, too. It was a dark, dark time. And I told very few people about it. I didn’t tell you much about it, did I? Why?
It was so embarrassing. And the doctors said the fissure would likely settle down, though it will probably always be there, I understand?) A surgery that can be done as a last resort, but it’s not always successful; besides, the thought of more surgery in my GI tract — anywhere, anywhere in my GI tract — sent me into further paroxysms of despair, so I did not allow myself to see surgery as an option. Also, I am tough, Midwestern, stoic. Also, I tend to isolate. I’m a writer, by nature an introvert. And you bet I was depressed, for obvious reasons. And when you’re depressed, you just … You know. Nothing.
Look, the whole reason I’m telling this story is because I don’t recall anyone ever asking me what I was eating. And I think that would’ve been good. Raw almonds can cause diarrhea. And when you’re going to the bathroom as much as I was, the fibrous skins are really, really hard on a bottom. Why didn’t anyone help me put this together?
Before anyone gets arch please remember what I have written many times over the 12+ years of this blog: My doctors, surgeons, and nurses saved my life on several occasions and, if I can find new ones, medical professionals will help me live a long time. I’m not hating on doctors. I’m just bewildered, as usual, by the chaos of it all.
Good grief, let’s wrap this up, shall we? I rarely give advice, but here’s some I feel good about:
If you know someone with a J-pouch; IBD; Crohn’s; Ulcerative Colitis; diverticulitis, or any serious affliction related to the intestines, ask us about their diet. But — and this is so important — don’t tell us what to eat or suggest we do this or that. It’s so hard to be told, even by well-meaning people, that you’re doing eating wrong. (For example: The German and the Russian both pushed yogurt on me constantly and made me feel like a failure because I didn’t consume quarts of it daily.)
Telling a person, “You should eat this” or “[X] is a magic food for the gut” is different from just asking what’s in our diet. Asking us what we eat from day to day gives us an opportunity to think about it. Maybe there is something we could do differently. I mean, it’s crazy: If I have even a touch of almond milk or eat something like I did the other day that has raw almonds in it, it’s awful. But I didn’t know for a long time.
There you have it, my suffering GI Janes and Joes. Here’s the question:
“Shh … Shh. It’s gonna be okay. Deep breath. Why don’t you tell me what you’re eating, honey. Let’s start there.”
Alice Skelton
No matter what I eat, I never have a solid exit.
I feel for you, as I too have 4-8 trips to reading room on daily basis. I’m lucky night moves are rare.
So, I eat what I want since it doesn’t matter. However almonds are not a favorite of mine.
Miss you on Fons and Porter along with
Liz and Maryanne.
Hang in there girl,
Becki Morrison
Thanks for your bravery and for sharing these words of wisdom. I am surprised and not so much surprised that no one asked you that question. Mostly im happy you were able to figure it out. Im sorry youve had to go thru all that.
Michele
I am 68 and I have UC too, only for one year now but I get it. Oh yes ! I have tried soy milk, gives me terrible gas, I tried Almond milk , YIKES ! went thru me like razors ……. I of course am playing with food choices too. I utilize a low FODMAP diet, stay away from as much as I can foods that cross over to my allergies, and watch which foods are high in Salicylates, Because I have a problem with aspirin and its family. My whole life I Always have had these food issues but now they have come to me in UC , It’s not fun, I don’t know where this is taking me, but what are the choices ? I can’t believe the one thing a Gastro should refer you to is one they don’t …..a qualified Dietician.
Kate
And then there’re the friends whom you’ve told about your food intolerance, mine is any form of vegetable pepper, and they continue to try to get you to eat it because they like it, or worse they sneak it into something because it’s only a little bit. It just can’t be as bad as you say it is, right?
Cara
This infuriates me. Whatever the reason for someone’s food choices, they should be respected.
Deborah Stone
So sorry Mary. My daughter had/has ulcerative colitis well controlled by diet ( yay). It took years to get to this point and is always ‘tweaking’ the diet as well as checking in with her naturopath .
So maybe we can ask..”are you tweaking Mary” .
I often wonder how you manage when you travel..tweaking on the road..a new song for you.
Thanks for the excellent information.
In your corner,
Deb
Lucile Lapin
Sorry for you and your GI . My husband had UC from age 14 to age 50. That is when he had a iliiostomy and enjoyed life so much more for the next 33 years. The surgeons closed the final sphincter so all waste went into the pouch he wore. No more always needing to know where the nearest bathroom is and staying home rather than take a bus tour. After the surgery, we were able to travel and not.be controlled by his colon. There were a few minor surgical adjustments because of scar tissue. He tried many different dietary changes, sometimes bland and soft food and no roughage then iceberg lettuce was ok but no Chinese food etc.for his last surgery to move the “rosebud” to the other side of his abdomen and it functioned perfectly. He could eat anything he wanted and go any place during his last 25 years of great retirement. Through the tough years he had regular visits to a psychiatrist which was a blessing too.
You are young and strong and wildly talented. I am certain that after all of the crap you are going through now, you will have a long healthy happy life.
You go girl. You are loved my all who know you.
Deborah Heyne
Poor Mary. You are the kindest sweetest person, not deserving of this. I guess it’s true what they say “God never gives you more than you can handle”. I think about you often…especially when I’m quilting. I hope they get this “thing” under control so you can just be Mary again. I’d love to see you back on tv and loving what you do. Best wishes to you.
Laurie
Thanks for your stories. My stomach and colon are not in the condition yours is in, but it can be such a pain. And no one has ever asked about what I eat.
Shirley
Cannot eat or drink anything with almonds or have
severe GI issues and incredible burning. Went to ER twice no help. Finally a friend suggested stopping any product with almonds. Thankful I found that out.
Our son has had UC since he was 21 now 47 and like you has been through so much. He is very quiet and stoic too.
We care Mary so share. You are a wonderful person .
And on another subject just love Quiltfolk .
Robin S
While babysitting my sister’s kids in another state when I was 21 ( I am 75 now) I got a painful lump on my rear end. Came home and went to doctor and told I had impacted fissure that would have to be operated on. All they did was slice it, and then when I had pelvic exams when having children different doctors would make comments about my “slice”. Later I got IBS, and was never told it might be connected to this. Now I am wondering. I have really bad spells and no one in my family or friends really understand when I say I have to go to the bathroom at strange times. And they can’t understand why I never know if I can go anywhere as don’t know when an attack will hit. My late husband never understood and always said we should be able to go somewhere if there was a bathroom. I used to take lots of Immodium when I worked so I could get thru the day without embarrassing myself. That ended up really messing me up. Now I mainly stay home all the time and feel that this has taken over my life as I never know when an attack will happen . I was always told I needed more fiber, and that has not seemed to help.
I admire you so much for all you have done with your life and all while coping with this terrible medical condition. I wish I had even a little of your courage and fortitude !!
Wanda N
Mary, sorry you these GI issues. It is difficult because you may be fine with the item today; but watch out for another time. Hope you feel better SOON!!
Laura Patterson
Mary, thanks once again for being so open and giving, even when it’s tough to do. You make such a wise argument for better healthcare for people afflicted by these issues. It shouldn’t be that hard to see the need! Xoxo
another quilter named Mary with food allergies and G.I. cr@p
Mary, I am so sorry you have to deal with this. I, too, marvel at all you’re able to do while living with your G.I. “challenges”.
In many states, people who knowingly expose someone to food they are allergic to can be charged with assault. Earlier this year, three Pennsylvania teenagers were charged with felony aggravated assault and criminal conspiracy for rubbing pineapple on their own hands, then high-fiving a classmate they know is allergic to it.
Food-allergy bullying is becoming increasingly common.
Maybe we should print out some of those stories and statutes and give them to people who think food allergies are a joke.
Like you, I have food allergies, intolerances and other G.I. problems. G.I. must be terribly hard to diagnosis, treat and manage, compared to other conditions, if your experiences and mine are typical.
After years of constantly living with the possibility of another episode at any time, and increasingly frequent hospitalizations and near-hospitalizations, dozens of specialist visits and tests, and narrowly escaping emergency surgery, I was referred to the Mayo Clinic. I had surgery there last fall, and have not had a single symptom since then.
I was very fortunate to have had the care of great doctors (all women!), nurses, and other staff. I’m so sorry your experiences have not been always been so positive. I hope your new doctors and care team are able to give you great care.
Thank you for writing about this. I don’t always want to share my ups and downs with my family and friends who know what I’ve been through, and sometimes I think about making a video on my history and symptoms for the next time I have to explain my story to a health care person.
Brenda King
Dear Mary,
Like everyone else, I wish you the very best. So sad to hear about what you had, and have, to go through. I have IBS, and my daughter has Crohn’s. We have a smidge of understanding. Bowel maladies are never fun. They are embarrassing. My worst was eating at a busy restaurant, my tummy made a tiny little growl, and next I knew, I’d expelled a puddle of brown water, all over the seat of my WHITE pants, and the seat! My husband had to walk behind me until we got to the car, then straight home! If it doesn’t kill us, it makes us stronger. You, precious lady, are very strong. You have such an exciting life ahead of you. This problem will always be there, but will eventually be overwhelmed by all the wonderful, exciting, joyous things in your life! (That’s my prayer for you anyway!) Keep going! You have places to go, and people to see! Thank you for ALL you share. I so appreciate getting to know you better, and enjoy what/how you write about your life and experiences! Love you Mary! : ) Brenda
Jeanne
I’ve had my j pouch for four years. If asked what I want for Christmas I still say “a colon.” I’d dealt with ulcerative colitis very well with diet for over ten years so was outraged when three doctors yold me my colon had to go. I’d had my annual colonoscopy which revealed an adinoma – “suspicious” growth. “The risk is too high it will go rogue and becime cancer” they said. As an over 60 diabetic with UC over ten years I was told by two if the three doctors I had to have a bag. Did those doctors examine me? Never laid a finger on me. Dr. number three examined me and said I had the necessary muscles to have a j-pouch. Mary I did not suffer as you dud leading up to my surgery, but since I’ve come to believe there are very very few medical professionals who have a clue how to guide patients with j-pouches. Eat more fiber I’ve been told – sometimes it helps, sometimes it doesn’t. I’ve just returned from a week long vacation traveling the southwest US but even the day before I left I feared getting on a plane for five hours. To eat or not to eat while traveling is always a dilemma. Blueberries are my almonds. But in two months it my almonds may be bananas. And it will be a nasty surprise!thank you for writing about this Mary and for being out in the world – it is not easy but too hard to live otherwise.
OHSue
As a nurse I always would remind my boss to “treat people where they live.” You have to take time to find out what happens daily in their lives.
As a wife and mother to GI sufferers I live a bathroom centric life, my sympathies to dealing with life’s struggles.
Helen
Like several of your readers I too have gi problems, named IBS and SIBO for the moment. I have found some relief by staying close to the low FODMAP diet. No almonds for sure. How you do what you do with all this, I don’t know! I seem barely able to care for myself and hubby. We are retired so don’t have to deal with going out every morning but traveling and eating out is always a guessing game. I keep meds on hand and take them as needed. Drink peppermint tea all day, and avoid so many foods it’s ridiculous. I do hope you find some relief from these problems somehow. I would love to go to Mayo and have one surgery and be done with it too!!
I love your blog. Enjoy your writing and am amazed by your quilting knowledge. I wish you the very best! And good health always!
Jan C.
Paroxysm of dispair. I see what you did there.
Hugs from Sacramento. I have such empathy for your painful condition, and I applaud your patience for the telling and the retelling. You have educated those of us who do not suffer such agonies, while allowing yourself to be embarrassed by the telling, and humiliated by the mental visual . This, my dear, is the picture of my hero! You have brought us into your world, given us a glimpse of your reality, you have let us peek behind the bathroom door to try to understand the devastating effects of just trying to cope with day-to-day-to-night symptoms. Thank you. Yes, HERO. Jan R.N.
Kathy J McBride
Traveling to be with my brother tomorrow as he has a colon resection. His prospects are excellent. (Now is when I tell you all about my health, right? 🙂
I keep a daily food diary. I never know which culprit will activate my personal condition(migraines) but have solved most of the issues by tracking my diet. By doing this, I discovered the “chronic bowel condition” was actually a sensitivity to grains. Also, your breakfast of Nutella and almonds would send me reeling. The Nutella, not the almonds.
I wish you the very best and am wondering if you’ve found new medical professionals to help you with this journey since your insurance changed. Trusting your staff is half the battle.
Pat C.
Nuts…they are sneaky little things.
I can some what feel your pain, being one with divericulosis for 12 years now. I have had bouts where it is mega unbearable, and that is not a strong enough statement. Trouble is the docs never tell you what to eat, not to eat, how to handle flare ups. Just prescribe antibiotics. Thank goodness for the internet. I found information that has been so very helpful. I changed the way I eat, now I food combine most of the time. Sometimes you have to buck the rules.
Mary, I hope you are on the mend, and are able to get back to “normal” things. Thank you for sharing your most private issues.❤
Theresa Libby
I am so sorry, Mary, for all of your pain, past and present. Truly.
Judy Forkner
I do have diverticulosis which can become diverticulitis at times, but I’m lucky–I started doing probiotics daily, & rarely have trouble anymore. I had one summer, shortly after my husband retired, when we would try to head up to the mountains for a hikI love nuts–hope I don’t have to give them up!e (lucky us, we live in Boulder, CO), & I would have to ask him to stop any place we saw an out house or little restaurant with a bathroom, because my gut was hurting & I felt like I needed to go. Then a friend suggested probiotics & I’m much better!
I do have a question, though: is it just almonds, or do all nuts cause problems for people with those issues?
Judy Forkner
Well something happened there & that comment is all messed up! Hope you can figure it out–I need an edit button!
Faith
Thank you for your bravery in sharing your story. Going through incredible pain these days & trying to pinpoint the food source. It’s ever-changing as others have noted. Every bit of information may help – bless you! Faith.
Mazie Crutchfield
Have gone through some of the problems a lot of these women have. And no more light colored pants for me anymore. Have been embarrassed so many times with a no warning accident . So I go prepared now. I hope you can get back to the quilt show on tv.
Li
Hi Mary,
Well said. Everyone is different. I was surprised that iceberg lettuce and spinach are gut wrenching, but Kefir and cabbage is delicious and tolerated. For those of you who can no longer tolerate dairy well, consider giving Kefir a try. Luckily bananas and blueberries are not a problem for me. Also for all of you out there, this can be cumulative so always consider exactly what you have eaten in the last 3-4 days prior to symptoms. It might surprise you. Also consider not drinking water with meals. It helped me a great deal.
-Li
Jeanann
Mary, you are an exceptionally brave young woman. Thank you for sharing the rigors that you have endured with your condition. My IBS seems mild indeed.Prayers for your health. [I too love Quiltfolk.]
Izzy P
Mary, all I can say is I feel for you. I can only imagine how all-consuming your condition is. With the amount of traveling you do for lectures, classes, etc, it must be so stressful to have to think about this all the time. I hope you find a good Doctor who can help you find a real solution. Sending hugs and best wishes.
Marilyn Jackson
Dear Mary,
You are very strong. You are talented and you recognize your talents and use them. I can only offer my best wishes for good health. Like many, you obviously use your periods of feeling great, to do what you want and need. And, I understand that you often go ahead with things even when you don’t feel well. Remember to treat yourself well, rest as much as you can, and say “no” more often than you think you should. As time passes, you will be glad you said “no” to lots of things, when your health and well-being is more important, even if you miss out on things now and then. And others will not be mad at you! Best to you — you are an inspiration.
Marilyn
Jay
I won’t go in to my health issues that led to this discovery, but can we talk about the “other end” of this equation? A lifesaver in the bathroom for those making numerous and painful trips: a bidet! After the sixth or seventh trip to the toilet, that “ultra soft” Charmin with soothing aloe starts feeling like 80 grit sandpaper on a spinning belt sander. I cannot tell you how sweet it is now to turn a little knob and get a nice little wash of cool, clean, water instead. Life changing. “Toilet paper is for drying off, not cleaning up!” says I.
I picked one up on Amazon for $25 (https://www.amazon.com/Astor-Non-Electric-Mechanical-Attachment-CB-1000/dp/B003TPGPUW/ref=sr_1_5?s=kitchen-bath&ie=UTF8&qid=1521570631&sr=1-5&keywords=bidet) and installed it in 10 minutes. It won’t make you want to eat almonds, but it could help relieve that last, parting shot, for food that decides it wants to wreak havoc on your GI tract.
Colleen
Thanks for the rest of the story.
Thanks for the story
It’s hard to “expose” yourself
I don’t tell people about my potty problems
I am so glad you are telling us about your gut issues
It is educational and helps us understand a bit about gut issues