Today, I am FINALLY feeling HUMAN.
I mean, with all things considered.
Whatever my daughter had, it decided to include myself and the other half in the mix of sickly soup.
It turned into Sinusitis, along with some triggered vomiting and the neverending supply of… bowel movements.
[Awesome]
So, with today being a much better day, I can now catch up and share!
Happy Friday, Friends!
xoxo
When it comes to seafood, I am thankful for a few things: My other half enjoys it, I have a small family to feed (which at times makes it affordable), it is fairly easy to cook, and it doesn’t hurt me.
Seafood is also quite light. You do not feel overly stuffed and uncomfortable after consumption, especially when pairing with vegetables.
Omitting heavier oils from my family’s diet, sauces are made with butter, white wine, stocks, and on some rare occasions – a teaspoon of coconut oil. The only salt I use -if at all- is pink himalayan sea salt, along with dried herbs like parsley, dill and basil.
Dinners with limited ingredients really help when fatigue is present. It makes it easier to sit down and not over-heat the body and keeps from having dizzy spells. Preparation is typically the more time-consuming task when in the kitchen, making the entire meal time anywhere from 20 minutes to an hour and a half.
Suppose you can say I have become ‘obsessed’ with looking at colonoscopies.
I never looked at my sigmoidoscopy from the first hospital stay because the nurse had informed me it was ‘brutal’ and ‘pretty nasty’. They couldn’t go very far in fear of rupture.
That was enough information for me at the time.
Now. Now, I want to know more.
I’ve been reading The Angry Gut and, even though the book is quite dated, it is still very informative and detailed. Granted, the details get into medical terminology that is quite unfamiliar, but it is nice to see it laid out on the body’s reaction and the results of chronic inflammation. Looking at my past colonoscopy, I didn’t know exactly what inflammation looked like.
Being the patient, I knew how it felt, but not how to read these pictures. There was some scarring, but that is the only thing I could SEE.
Only half-way through, the author had put in detail what could be discovered during a thorough colonoscopy. Out of curiosity, I had to dig up my pictures and compare to what was described in the book and what Google Images had given me with the safe search off.
So far I have learned:
The scarring is actually referred to as pseudopolyps. Recalling a conversation with my gastroenterologist, he had mentioned the state of inflammation my colon was in concerned him because he feared the scarring would get worse and build out, which overtime, can lead to problems such as bowel obstruction.
When browsing through the photos, there were these small discolored bulges littered throughout and I didn’t notice how many there really were. It is nowhere near as bad as some that are floating around the internet, but wow. Tiny pieces that resemble skin flaps and whitish specs all around the walls in a few of the frames showed me how this looked during a time of REMISSION.
Inflammation looks red and swollen and… smooth?
What I originally believed was these pictures were freeze-frames of where issues were not apparent. It didn’t occur to me that these smooth splotchy characteristics were that of Ulcerative Colitis. I mean, it’s an organ. It’s red. It’s veiny. What else was I to think?
Ugly lesions. The rigidity that was shown in two of the frames I thought were normal… to only learn they are hard lesions that follow along the walls of my colon.
Now, I am not mad at my GI for not going over each part of my colon scrapbook. I am well aware the world does not revolve around me and he sees many other patients. He sees me often to go over how I’m feeling, blood work, medications, etc. I do have an all-around good gastroenterologist in comparison to the one before him.
He encourages questions and loves that I do my own research. When dealing with something so draining that takes such a physical, mental and emotional toll on you, knowledge is so important. Going in completely blinded with trust in a professional can lead to decisions you may not agree with or understand.
Knowing now what my colonoscopy shows when my Ulcerative Colitis isn’t ‘active’, it frightens me to think what my colon looks like during a time of a flare.
This urge to know, the want to know, has shown me how bad this can get.
At least curiosity won’t kill me.
“As no two persons are exactly alike in health so neither are any two in disease; and no diagnosis is complete or exact which does not include an estimate of the personal character, or the constitution of the patient. … for to treat a sick man rightly requires the diagnosis not only of the disease but of all the manner and degrees in which its supposed essential characters are modified by his personal qualities, by the mingled inheritances that converge in him, by the changes wrought in him by the conditions of his past life, and by many things besides.”
-Sir James Paget, English Surgeon and Pathologist
“Pathology would remain a lovely science even if there were no therapeutics, just as seismology is a lovely science, though no one knows how to stop earthquakes.”
– H.L. Mencken
Today I learned something that I feel will better help me in this journey with chronic illness:
You cannot argue facts with someone who believes everything they read on the internet.
It isn’t worth the time to fight off the negative energy that some of these people radiate. The stress and tension that starts to develop behind each letter that is aggressively typed in starts to effect the gut reaction and that does not typically end well.
This individual doesn’t live with a chronic illness and yet, wishes to pick an argument on the very subject she knows nothing about. She wants to throw judgement out and state that if we live more proper lifestyles, those of us who deal with IBD could be cured.
Cured. With another “miracle diet”.
It angered me. Yes.
I was trying to respond to this person as calmly as I could, even though I just couldn’t believe how disrespectful she was being. Realizing that my words held no real meaning to her and we were going to be moving in circles, I waved my white flag before this became a non-stop argument on someone else’s feed, and wished her well.
Kill them with kindness.
It still bothers me a little. If you are going to approach someone about their life, you shouldn’t throw out inappropriate assumptions. You sound rude, inconsiderate and insensitive.
Especially through social media.
Not only has this mode of communication desensitized us as a whole, but it also has promoted your average barista or cashier into a doctor, psychologist, chemist, dietician, weatherman, and politician. Everyone has a say in what is right or wrong, who is right or wrong, and what you or I should do about it.
Those of us with chronic illnesses are not crying for attention. We want help and support. We are doing the best we know how and should not have to feel like we are constantly defending ourselves. (I know, this sounds familiar.) We are not looking to be criticized and mentally dissected.
Or, pretty much be told this life is our fault.
People are so quick to be nasty and knock others down when they do not understand what they are going through.
We are grown. When we try to share and educate others on what we go through, don’t regress to middle school years. Don’t be a bully.
You cannot teach those who do not wish to learn. And, if you do not wish to learn, you can simply skip over and move to the next post…
Easing into solids without being insanely boring can be tricky. You don’t want to create a dish so bland that it’s unpalatable and you don’t want to slather your food in spices and seasons for fear it will exacerbate any inflammation.
So, I went with a light, Asian inspired sauce to go with chicken and white rice. My daughter and boyfriend like sweet and sour, but I just didn’t have everything on hand to make it. Instead, I whipped this up:
AND, I remembered to jot down the ingredients in case it came out good – which, it did! My daughter ate it ALL, and that in itself is success because she is not a huge fan of rice. 🙂
1. In a small pan on medium heat, add: apple cider vinegar, ketchup and orange juice. Bring to a light boil and slowly add brown sugar, stirring constantly to break down ketchup and brown sugar.
2. In a separate bowl, combine cornstarch with water. Slowly stir in the mixture until the liquid starts to thicken and bubble.
3. Turn down the heat to low. Sprinkle in some Ginger and slowly add sugar while stirring.
4. Allow to sit and simmer while the rice and chicken finish cooking.
Add chicken to the sauce, coating evenly. Plate the rice and top with chicken.
Spoon remaining sauce on dish.
The beauty about this is, if you like a little more zest and tang, than you can omit the sugar and adjust the amount of brown sugar to your liking. Also, it’s 100% gluten-free!
Enjoy!!
We finally had our first Crohn’s and Colitis support group meeting at the local library this evening and am ever so thankful I went. I even brushed my hair for the first time in weeks.
Due to dinner for the tiny family and a spacey wrong turn (I’ve only been here a gazillion times now) I was a wee bit late. It didn’t help that after pulling in, I sat there in the dimly lit parking lot taking some deep breaths to calm the nerves that were making me a little shaky.
Being nervous probably seems silly, but I’ve never attended anything like this. In fact, since my diagnosis, there wasn’t one set in stone. Questions circled – “How many people are going to be there?”, “Is there going to be anyone around my age?”, “What will we discuss?” were just a few…
Well, it was small, yes there was, and we all got to know each other. They were such a nice group of varying ages with similar, yet different, experiences and diagnoses. People that truly understand what your life is like.
To meet someone around the same age as me was such a nice bonus. We are both equally excited about this and have exchanged numbers and are now friends via social media. This works since it is going to be a month until our next meeting.
My newfound friend had also shared with the group of this petition that needs signing. Stat.
Please, sign this and spread this around. Share the link and your love.
Good Night, Friends.
It seems lately that I may be coming off a little strong in my refusals to accept advice that was never asked for in regards to my Ulcerative Colitis. I do not share this personal battle for pity or sympathy, but merely to keep friends and family in the know about what my experience has been like. Why I cannot attend most gatherings or forget to phone in and reply to messages. To keep from feeling like I’m fighting a constant battle to get people to listen to me without interruptions or feel like I have to justify any “excuses” I may have.
So, as a means to simultaneously inform and request, please refrain from:
Must be nice to take naps.
Not really. There is nothing fun about having absolutely zero energy and a lot of fatigue. So bad, that after waking up you cannot wait for nap time to rest up. There is nothing nice about having an erratic, almost insomniac-like sleep pattern that comes and goes.
We are not lazy, we are out of our mind exhausted.
You should try the __________ diet.
I should?
Food is probably the most consistently inconsistent issue for us. Our ‘diet’ constantly changes because our bodies’ reactions are constantly different. Although some foods could suddenly trigger a flare or severe irritation, there is no evidence food caused the IBD in the first place. Diet is not going to make our IBD go away. In fact, there are more things we cannot eat than you may realize.
Just like medication, it is all trial and error.
Are you taking your medicine?
Speaking of medication…
Just because I am having a flare, it doesn’t mean I willingly tossed aside my prescriptions to allow myself complete discomfort and pain. We do not have to be without medication for our bodies to wreak havoc on themselves. Sadly, there is no guarantees. Which is why a lot of us move up the prescription ladder with the scarier and harder to get approved for drugs. Unless the doctor or a nurse says otherwise, I keep taking them…
I suppose this is the second most consistently inconsistent issue that will not make our IBD go away.
You look pretty good for someone who is sick.
-or- You don’t look sick.
Thank you…? Is there now doubt because I bathed and embraced the public for a few hours? Have you never ran errands or tried to leave your four walls when you have a cold or are just getting over the flu?
Even on a seemingly good day, there’s no telling what our insides are doing.
Well, if you came out more…
This cuts a little deep. Doing the basic everyday household chores can be taxing on our bodies at times. Hell, having a phone conversation can be energy reducing. Typing this can get tiring. [a nap interrupted this post]
Also, for many of us on a multitude of drugs and immunosuppressants, we run the risk of other ailments such as: sinus infections, upper respiratory infections, severe colds, the flu or flu-like viruses, especially during the winter months. And, I don’t know for all, but I do know for myself that some of these infections and viruses stick around for weeks. There are good days, bad days, and worst days. Quite often, if I get out one full day it puts me out of commission for almost a week or longer.
To put it ever so simply – My body is not able to do what it used to.
I have the same thing you do, but mine went away and never came back.
Then, you did not have the same thing I do. It doesn’t just go away.
This is a chronic illness.
I thoroughly appreciate understanding and kind words, caring questions, informative articles and gut-friendly recipes.
This is not meant to be abrasive or mean or insensitive. It gets mentally and emotionally tiresome to repeat myself. I’m also noticing it comes off as if I am not trying to take care of myself which couldn’t be farther from the truth.
I love all my family and friends for all their support over the last few years. But, please, don’t tell me what you feel I should be doing to keep myself out of the hospital.
It just doesn’t work that way.
xoxo
It has taken a while, but I’ve finally made it to where sitting at a computer isn’t completely intolerable.
The hospital stay was from Sunday to Tuesday night, but let’s face it, any time spent locked down is too long. Dreadfully long. Then, you have your ‘psuedo-recovery’ as I call it: the timeframe from when you left until you feel more normal. Where you mope around completely lacking in energy and feeling weaker than when released, until you sleep yourself to a coherent consciousness. When you no longer feel dizzy from getting up and can finally consume the right amount of water to keep hydrated.
No matter the length of stay, being away from home really does put your life on PAUSE. Whatever you did up to the point of being admitted, is still where you left it. No progression. No regression. Just there. Life all around continued to move while you were stuck in some sort of patient purgatory and your lists made to keep organized have not changed. All that you wanted to complete is still in limbo. Nothing moved. Nothing got better or worse.
Life is just there.
Every time a flare sneaks its head in, your diet gets another overhaul. Especially after a hospital stay. RESTART.
Yes. I’m sure staying another day or two confined to a sweaty bed would have me eating solids a lot sooner, but who REALLY wants to do that?
Not me.
My gastroenterologist wanted me to continue a full liquid diet for a couple of more days to allow extra healing time for my colon. There was just no way I could continue eating what was there.
Sweets and sugars. Blech.
So, I made some quick pumpkin soup Wednesday night (that was a world of fun!) to break up the monotony of dairy and broths. It came out surprisingly tasty, I must say.
Then, I had it for lunch yesterday…
Now, I’m progressing into the world of purees and mashed foods. It is painfully slow, however, I have to remind myself that painfully slow is better than severe pain. While my family is eating solids, I will just ease into my mashed sweet potatoes/carrots tonight, happy it isn’t broth.
Happy it isn’t worse.
Because, it can always be worse.
Now, about that meditation challenge…
inflamed in the membranes 