Inflamed and Untamed

New Website: I’ve Moved!

FINALLY!

My new site is up and live and I’m really proud of it. This is a project I’ve been working on behind the scenes for over a year now and I’m so excited to have it live. Like, really really excited. I’m still not completely done moving my posts and designing the site but I wanted to launch it anyway so that you can finally see what I’ve been up to.

I really hope you’ll take a look. I recommend viewing it on desktop/laptop version first so you can see all it’s cool features that are not available for mobile.

NEW URL

Here it is: https://inflamedanduntamed.org/

My URL has changed so be sure to bookmark it. You know… if you want.

WHY THE NEW SITE?

A decade ago when I started Inflamed & Untamed I had no idea what I was starting. In fact my site wasn’t even called Inflamed & Untamed until months later. This all began one day during the summer when I was out of work (again), just out of the hospital (again), and tapering off steroids… again! I just wanted something to do and so I started my site on Tumblr and I also started making videos on YouTube.

I had no idea that I would receive the kind of traffic I ended up getting and it all happened so fast. I never went into it thinking I was creating anything more than a small personal blog that would maybe get a few followers and connect me to a community. This was back before Instagram existed and when there were not very many patient advocates out there at all; especially on YouTube. I think that was part of my unexpected success. Here I am now a decade later and all this time I’ve been a patient advocate which is an honor and privilege I hold near and dear to my heart.

Back then I had no skills at all when it came to anything website or YouTube related. I shot my videos in one take, filmed on my laptop webcam, and posted them unedited and I used Tumblr for my site because it was easy. I have wanted to move from Tumblr for so long but the task seemed too complicated and I didn’t want to deal with it nor have to worry about losing my followers in the process. Over the decade I have acquired many skills that I taught myself completely on my own. I’ve learned how to edit videos, graphic design, market, and now I just built a whole freaking website!

WHAT TO EXPECT: THINGS I’M EXCITED ABOUT

I just got a new server that will improve the website performance so stay tuned for that. Right now it runs a bit slow because I built a freaking circus on it!

I am still working on transferring all posts there and properly redirecting everything from here to there. Jesus H why did I use Tumblr?!

The appearance is something I am working on. It looks all freaking fantastic on my computer and then I ask Dan to open it on his and it looks like a nightmare. So if it looks crazy to you rest assured this should get better. There are also a few things to work out here and there such as the categories right now are linking to all my posts and not just posts tagged under certain categories. If you notice anything off about my site please leave a comment or email me and let me know.

I’ve added so many features to the site that help make learning information about IBD and/or motility disorders easier and hopefully fun.

There are quizzes you can take to asses your understanding of articles that are more educational than they are personal.

I love the 80s/90s theme I chose.

The site makes it SO MUCH easier to find my content. My old site (this one that you’re on) made it hard for people to easily search out topics they were looking for and my older posts went forgotten even though many are still relevant and very useful.

Anyway I am excited and now you can all stop thinking I just disappeared. I’ve been here all along but doing things behind the scenes as well as the advocacy stuff I do out there in the real world when I am able.

Excited that this year I can finally get back to creating videos and new posts but I say that as a hope but knowing that my life with chronic illness has always been unpredictable and that the things I want to do versus the things I am able to do often don’t align. I have lots of fun ideas that hopefully will come to life!

<3 <3

Sara

The Ultimate Guide to Flying with TPN Series Part 2: How to Pack

This post has a new home on my new site. Follow the link below to find it!

https://inflamedanduntamed.org/packing-tpn-for-travel/

The Ultimate Guide to Flying with TPN Series Part 3: What Happens at the Airport?

This post has a new home on my new site. Follow the link below to find it!

https://inflamedanduntamed.org/the-airport-with-tpn/

The Ultimate Guide to Flying with TPN Series Part 4: Making the Most of Your Trip.

This post has a new home on my new site. Follow the link below to find it!

https://inflamedanduntamed.org/travel-and-swimming-with-tpn/

Crohn’s Disease and Ulcerative Colitis: All You’ve Wanted to Know & Things You Didn’t Realize You Needed to Know!

I was tagged in the #IBDAdvocacyTag

I decided to try and fit as much info on Inflammatory Bowel Disease (which includes Crohn’s disease and ulcerative colitis) as I could in under 10 minutes. I came close!

I challenge you to do the #IBDAdvocacyTag! It can be a video, blog post, or social media post.

With Pain you Can’t Fully Experience Life.

What a beautiful moment, witnessing all these butterflies and bees (pictured below). Unfortunately another moment in my life that was ruined by severe chronic pain and embarrassment.

Instead of being able to enjoy this moment my mind was somewhere else. All I could think about was how badly I needed to get out of there. I actually felt panicked. I felt trapped because I was trying to maintain a facade of “doing OK.” Embarrassed because I was with two new friends I had only just met in person that day and I didn’t want to ruin our good time with my pain.

So I trucked along, stopping every few feet to sit down because the pain was so bad I could no longer stand. Thankfully my wonderful new friends are understanding and would stop with me to rest and didn’t make me feel bad. They have their own chronic illnesses and experiences with pain.

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What Life with Chronic Intestinal Pseudo Obstruction is Actually Like.

This is reality. I drove my car for the first time since June a few days ago. I had to drive 5 hours to Michigan to see my doctor. Just doing that simple thing has wiped me out. I slept until almost 2PM the day after I got back to Illinois and I’ve been running a slight temperature and feel overall awful. My nausea has been a lot worse the past month or two but we switched my nausea med to the IV version so hopefully that will help.

Living with the rare disease, CIPO and Intestinal failure caused by CIPO is difficult. Like really, really difficult. Normally if a patient comes into the ER with extremely dilated loops of bowel with air fluid levels and has symptoms of severe pain, nausea, and vomiting they are treated as an emergency. They are admitted and will have an NG tube placed for decompression and will be NPO and put on IV fluids and pain medicine. Sometimes surgery is required. Luckily for them there is a resolution. An end in sight.

Dilated loops of bowel with air fluid levels is the radiographic picture of a bowel obstruction. That is what a bowel obstruction looks like on imaging tests like CT scans and X-rays, MRE’s and barium follow-throughs. In patients with severe CIPO we live that every day of our lives but there is no fix. No surgery or solution to make it go away like for patients with actual mechanical obstructions or temporary ileus’.

Every

day.

There has not been a time in the last decade where my digestive system hasn’t had diffuse dilated loops of bowel with air fluid levels and most times a dilated stomach, too. In fact I had to Google what a normal small intestine looks like on imaging because I’ve never seen mine look normal. The difference is startling. Somehow those of us with CIPO are supposed to manage to live our lives this way when people who have insides that look like ours would be treated as a medical emergency. In CIPO there isn’t a mechanical reason for obstruction. Instead the body looks and behaves just as if it has an obstruction because peristalsis is weak, absent, or inefficient due to visceral neuropathy or visceral myopathy. CIPO always affects the small intestine but can also affect the entire digestive system and even other organs like the bladder. In my case my whole system is affected.

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Please Stop Apologizing to Me Because I Can’t Eat.

I’m often asked what is the most difficult thing about having intestinal failure and being on TPN. Most people assume it’s not being able to eat and others assume that it must be the adjustments you have to make to your daily life. I have to agree that yes, those things are very difficult and I’ve been angry and sad and everywhere in between about it. Some days are better than others.

But to me the most difficult thing about being on TPN is

How Others Treat Me Because of It.

It’s one thing to lose the pleasure of eating but to add insult to injury TPN has caused people to stop inviting me to events and I have had to miss out on things that I want to be a part of. Almost everything revolves around food and drinks. When friends get together they usually want to meet for dinner or go out for drinks. When you start dating someone it’s the same thing. Holiday’s revolve around food. Your mom and Grandma probably think that they aren’t loving you enough if you didn’t eat 5 plates of food and then take some home with you when you visit them. I could go on and on! It’s probably difficult for you to think of the last time you were invited somewhere and food wasn’t involved.

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Swallowing an NG Tube Like A Champ!

Here is a video from a few months ago after 2 NJ tubes (used for feeding) kinked and I had to have an NG tube inserted for decompression because my stomach and intestine were so dilated.

I wrote a post on another site on my tips for making swallowing tubes easier. Check it out here if you’re interested.

Vomit.

This post has a new home on my new site. Follow the link below to find it!

https://inflamedanduntamed.org/vomit-my-life-with-chronic-intestinal-pseudo-obstruction/

TPN Backpacks: The Best Backpacks for Home Parenteral Nutrition Part 2.

This post has a new home on my new site. Follow the link below to find it!

https://inflamedanduntamed.org/best-backpacks-for-tpn/

The Distention that Comes with Chronic Intestinal Pseudo Obstruction.

As most of you know, I have a rare disease called Chronic Intestinal Pseudo Obstruction. If you are not familiar with CIPO or my story with it you can check out this page.

Today I want to talk about a big part of my life with Chronic Intestinal Pseudo Obstruction and that is the distention that comes with it. I figure I’ll start with showing you pictures I took a couple months ago.

This is all stomach and small bowel. I do not have a colon or rectum.

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HUGE GIVEAWAY Inflamed & Untamed Celebrates 6 Years!

I’m just going to cut right to the chase here. Inflamed & Untamed is turning 6 on September 1st and I want to give you stuff!

It’s hard to believe it’s already been 6 years since I recorded that first video and posted it here on my website. I never imagined where this would take me but I am so thankful for the journey I’ve had so far. In so many ways everything is exactly the same as it was when I began. I’m still just a girl sitting behind my computer in my pajamas with a big heart and a dream to make the lives of people living with chronic illness’ better. I still have so much passion for getting out accurate information about the conditions I live with to patients and the general public. I want people to feel less alone and not like I did growing up, and thanks to social media I can see that happening today.

But enough of that and let’s get to the prizes.

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“Advance Directive? You Don’t Need That!”

One of my home nurses this year when meeting me the day after I got discharged after my 3rd hospitalization this year with a BMI of 15.6:

Him: Do you have an Advance Directive?

Me: I do but I haven’t finished it yet. I keep meaning to.

Him: Oh, well you’re young!

Me: ….

*thinks to self*

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A Night in the Hospital: How Many Times Someone Entered My Room at UMich.

During one of my last days during an admission this year in February at the University of Michigan hospital I decided to document the number of times a nurse or someone else entered my room during the hours I was trying to sleep and what they came in for.

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