Toilet Paper Princess: Tales of an Ulcerative Colitis Warrior

I was diagnosed with Ulcerative Colitis in December 2012. This is my journey!

#26 – I’m a Barbie Butt Girl!

In 2015 when I had surgery to have my colon removed and an ileostomy placed, I was planning on returning for two more surgeries to create a J-pouch and then hook it up. Since then, it has been three years and Rosie, my stoma, and I are getting along great! My life has become so different, in a positive manner, and I was worried about going for a J-pouch and having it backfire on me.

Last summer, my family and I drove to Florida to go to Disney World! DROVE! That’s a 17 hour trip from Wisconsin! If you would have told me that we would be able to drive there when my UC was at its worst, I would have laughed in your face, and then maybe would have gotten choked up because I was devastated that I could not do fun things with my family as a result of my uncontrolled UC. However, thanks to Rosie, a long road trip to Disney was now not only a possibility, but a reality!

In the meantime, my rectum remained intact after my initial surgery in 2015, acting as a placeholder of sorts for my future J-pouch. It began to become abundantly clear that the rectum was still riddled with horrible ulcerative colitis despite not being connected to anything, so no bowel movements were going through it. I was still bleeding and having mucus output from my rectum on a daily basis. I was having to wear a pantyliner everyday because it would leak if I sneezed, coughed or laughed too hard. I contacted my GI and he did a rectal scope, but was not successful in doing a full scope of it because it was so deteriorated. At this point, I decided with my medical team that the rectum needed to go, and Rosie would become my permanent sidekick! She and I were getting along so well that it seemed only logical to keep her, and toss out the idea of a J-pouch because of the risk of failure from the prevalent disease in the remaining tissue. It was time to schedule my final surgery.

The final surgery to make Rosie permanent has a technical term (protectomy), but those of us in the IBD community love to have some humor, so we call this surgery the “Barbie Butt” surgery! (Because the butt is simply there for looks now, not function, just like Barbie!)

I had my Barbie Butt surgery on July 2, 2018 at the University of Chicago Hospital.

The procedure was fairly lengthy, but it was successful with no major complications! They were able to remove the rectum laparoscopically, with a circle incision at the site of the rectum to remove it. Then, it was sewn shut. The recovery period for this surgery varies with each patient, as all surgeries do, but is expected to take anywhere between 4-8 weeks.
One big tip that I have for those of you having to stay in the hospital whatever reason is that you should ask if your hospital allows you to wear your own clothes, rather than a hospital gown. If they allow it, you should do it! It really makes a big difference in how you feel if you can relax comfortably in your own comfy yoga pants/sweatpants and shirt. If you are feeling comfortable emotionally and mentally, it will reflect positively on your physical feelings too.

Although this surgery is not ideal, I am happy to be free of UC. This is MY body and MY life, and I call the shots, not ulcerative colitis!  This Toilet Paper Princess is now a Barbie Butt Girl too!

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#25 – I Wrote a Children’s Book!!!!!!!

Ever since I was younger, I knew two things…I wanted to be a teacher and I wanted to write children’s books! I grew up to become a teacher, but until recently, my dream of becoming a children’s book author had not come true. That has since changed!

When I was diagnosed with ulcerative colitis in 2012, I was disappointed with the lack of resources for children. I wanted to be able to explain my diagnosis to my children in a kid-friendly way, but the only resources I could find were more appropriate for pre-teens and up, and my children were under 4 years old. I became determined to write my first children’s book and make it about ulcerative colitis and I would create the resource I was searching for!

Since I already had my blog, I had a great jumping off point, but this blog is aimed more at adults, so I needed to take my experiences shared in my blog and put it into “kid-terms” for the book. I got to work right away, writing, revising, re-reading, revising and so forth. Then, I wanted to make sure that the information in my book was medically accurate, so I had two of my doctors read the manuscript and give me feedback. I made more revisions based on their responses. When the manuscript was ready, I shared it with my cousin, Megan, who is a graphic designer, and she agreed to help with the formatting and introduced me to the most AMAZING illustrator, James Powell.

James agreed to do the illustrations, sharing with me that a family member of his was also diagnosed with IBD, so the cause was personal for him as well. The first picture he sent me was a picture of me!
I cried when I saw the pictures because it was EXACTLY what I had pictured in my head! The friendly cartoon-like eyes and face were perfect! I wanted to be able to explain the disease, without being scary. I could not be happier with how amazing the book turned out! I even sent him photos of friends from my social media groups and of two of my doctors and one of my nurses, and he drew them into the book! When he was done with the illustrations, my cousin Megan formatted the font and laid the illustrations and text out on the pages and uploaded them to Lulu, a self-publishing site.

When it was all ready, I ordered 15 copies for myself to being with to Chicago for my surgery because I wanted to give my medical team signed copies! When they came in the mail, they looked even better than I had ever imagined! Two of my passions came together to create a wonderful resource to share with my children, and children all over who are learning about ulcerative colitis and Crohns whether they have been diagnosed themself, or a loved one has been diagnosed.

Click here to buy my children’s book
Toilet Paper Princess: Tales of an Ulcerative Colitis Warrior
for just $10 on Lulu!


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#24 – The Ups and Downs of UC (Give or Take a Few Pounds)

So, as you know I hope to have 2 more surgeries in order to eventually have a J-Pouch. Trouble is, my surgeon said I needed to lose 30 pounds before we can do the second surgery. Now hold on…before you start sending hate mail to my GI, my surgeon and the rest of the amazing team at the University of Chicago Hospital, let me explain.  In order to create the J pouch, the surgeon and his team will need to pull my small intestine down to my rectum  where they will create the J pouch and attach it.  In order to do that, there must not be a large amount of tissue or fat holding my small intestine where it is. Believe me, I watched the video the Dr. Hurst gave me  of my own surgery, and he is not kidding that there is fat tissue surrounding the small intestine. I saw it with my own two eyes… Not pretty! So anyways, in order to safely be able to embark on the J-Pouch journey, I will  need to lose 30 pounds. Hmmm…  That doesn’t sound too bad, does it? Except the fact that the amount of prednisone I was on after my surgery, combined with my body’s newfound ability to absorb nutrients that I was taking in,  added another 10 pounds on top of the 30 pounds that I need to lose. Great. Just what I wanted. Thank you very much.

I shouldn’t really complain… In all actuality I feel the healthiest I have ever felt UC wise,  since my diagnosis. I feel blessed to have been given a second chance so to speak. Everyone around me recognizes the new spark and twinkle in my eye, the renewed pep in my step.

The trouble is that I can’t seem to lose any of this stinking weight since this yucky asthmatic/allergy cough won’t go away. I cannot exercise or it throws me into a coughing fit. I am currently stuck at the mid-point of my weight loss. I need to lose another 20 pounds in order to schedule the 2nd surgery to create the j-pouch. However, I am starting to lose faith that it will ever happen. Maybe I have this cough for a reason. Maybe someone, somewhere is trying to tell me that where I am right now is where I am supposed to be. Rosie (my stoma) and I could be lifelong buddies…she could be my sidekick for life! Every super hero needs a great, dependable sidekick, right?! Why can’t Rosie be mine?

Regardless of what happens, I will need one more surgery at least. If I end up giving up on the j-pouch, I will require one more surgery to remove my rectal stump and permanently close up shop….so to speak. Then Rosie will be my lifelong sidekick. If I do lose the weight, I will need the 2nd surgery to remove the rectal stump and create the j-pouch and the 3rd surgery to “take down” my stoma and reconnect things.

Unfortunately, my rectum has been staging a protest of sorts, I believe to remind me that it is still there, with the UC in full swing. I don’t get affected by it as much since no waste travels through it, but it does still have mucus and blood that comes out when I go to the bathroom. I have been having a ton of phantom urgencies, where it feels like I have to go BM immediately, but that is physically impossible. That bleeding and mucus are a constant reminder that my body is still riddled with this horrible, relentless disease. I do not know how much longer my body will hold up. It still drains my energy.

I am not giving up on the possibility of a pouch, I am simply coming to terms with the fact that this may be my future. And honestly… I’d be A-OK with that.

It all comes down to this…I am stronger and more resilient than this disease. My life belongs to me. Not UC. So no matter how this story ends, it will be my way…not UC’s way!

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2015 in review

The stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,500 times in 2015. If it were a cable car, it would take about 42 trips to carry that many people.

Click here to see the complete report.

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#23 – “Wish Upon a Star” CCFA Painting Fundraiser

A good friend of mine is a former art teacher, who has since started her own business of teaching the “paint and sip” type of classes. I asked her if she would be willing to help me hold a fundraiser to benefit the CCFA. She said yes and I began to plan the event! It was actually very easy to plan!

After Laura confirmed that a date with me, we came up with the design concept for the painting and then decided on a location that she had used in the past, and I was very familiar with as well! We chose the private party room of a local bar, Buckets Pub. Laura has enough supplies for up to 70 people, and Buckets Pub can seat that many. I booked the room and paid the rental fee. That was the easy part…getting people to sign up was where the hard work was!

Publicizing the fundraiser was pretty involved. In order to get it out there for people to know about and sign up for , I

*decided on a name for the fundraiser.

*designed a flyer for the event.

*created an event on Facebook and invited everyone on my friend list in the area. I made the event public so that guests could invite other guests.

*offered an added incentive of an extra drink token for the first 10 people to sign up.

*posted info about the event in several local IBD groups that I belong to on Facebook once every week or so.

*posted info about the event on the CCFA WI Facebook page several times.

*posted into on my local teacher’s union Facebook page several times.

*emailed friends, family, colleagues and healthcare providers in the area with the fundraiser flyer attached when I planned the event and then again a few weeks before the event to remind them to sign up if they hadn’t already.

*sent a copy of the flyer to the owner of the bar where the fundraiser was going to be held and she hung it up around the bar a month before the event.

This is the flyer that I created using “Pages” on my mac:

wish upon a star fundraiser

Since the event was a fundraiser for the CCFA, I wanted to make sure I was not just raising money, but also awareness for IBD. I gave a short 10-15 minute intro thanked everyone for coming, introduced myself and gave a brief bio of myself and why I wanted to hold this fundraiser before showing my video clip from a previous blog post here. I tried very hard not to get choked up while speaking, but I got a little emotional anyway. I have been through a lot, as have the other IBD warriors and those with invisible illnesses in general. It was hard to watch the video during the event too, because I was wondering what people would think, but everyone really paid attention, shaking their heads in disbelief at how hard it had been at various points of my battle, some shed a tear or two during the presentation, they laughed at the funny parts and smiled during the triumphant parts. Many people came up to me during the event to thank me for sharing my story. Some knew nothing of IBD before today, some knew someone suffering with IBD and a few had IBD themselves, saying that it is great that I can speak so openly about it and help raise awareness. Others hugged me, thanking me and telling me they were proud of me for using my diagnosis as a calling to help others. It was a very humbling yet empowering thing.

Along with the painting portion of the fundraiser, I decided to hold a raffle as well. People could buy one raffle ticket for $1 or five tickets for $3. Towards the end of the night, I picked winning tickets from a bag. What was raffled off? I had some extra “Toilet Paper Princess” shirts that I donated, a coupon for a certain amount off of Laura’s “Don’t Drink the Paint” classes and one of the sample paintings from the night (donated by Laura), a gift certificate for Buckets Pub, a few bottles of wine (donated by Buckets Pub), and some shirts, hats and bags from the “Take Steps” walk fundraiser that was donated by the CCFA WI chapter. Since everything was donated, all of the money raised by the raffle went to the CCFA! I raised around $180 in raffle tickets alone!

I placed a thank you sheet with facts and information about IBD my blog information. I also had a little organza bag with Hershey’s Hugs and Kisses in it at each seat.

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The fundraiser was a HUGE success! That night, I laid in bed, buzzing with excitement, relief, amazement, pride and joy. I had met a handful of local IBD warriors and exchanged info with them to keep in touch. I had shared knowledge of an unknown/misunderstood disease with people. I raised money…LOTS of it…for the CCFA! After all was said and done, I am mailing a check to the Wisconsin Chapter of the Crohn’s and Colitis Foundation of America for a grand total of $815!

I will definitely be holding this fundraiser again! It was such a success and everyone had a great time!

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#22 – Things I Have Learned Because of Ulcerative Colitis

As I sit back and reflect upon my summer so far, and how drastically different it is compared to the last two summers, I am astounded. One thing is for sure, UC has really made me more appreciative and grateful for everything and everyone in my life. I started to compile a list of things that I have learned….good and bad….because of Ulcerative Colitis. Here is what I have so far:

  1. I have learned to loosen up a little bit more and not take life so seriously all the time.
  2. I have learned that there is joy in everything around you.
  3. I have learned that even though I am very strong and determined, I do need people to support me and that it is OK to admit that I am weak sometimes.
  4. I have learned that I am even stronger than I ever thought that I could be.
  5. I have learned the meaning of true love and true friendship.
  6. I have made amazing new friends all around the world because of the disease.
  7. I have learned where the bathrooms are in every store that I shop in.
  8. I have learned to keep extra ileostomy supplies and clothing with me in case of an emergency.
  9. I have learned how to push through the tough times because it makes the good times even sweeter.
  10. I have learned that chemotherapy drugs are not just for cancer. I was on several myself for my UC.
  11. I have learned how to talk about poop anywhere, anytime, with anyone!
  12. I have learned about so many different autoimmune diseases and empathize with those warriors.
  13. I have learned how to advocate for myself and my health.
  14. I have learned that I can be an inspiration for others just by being me!
  15. I have learned humility – it is not easy to tell your boss you have to leave work for a brief period of time to run home, change clothes,  change your ileostomy bag and clean up before returning to work.
  16. I have learned to request not to be prescribed Golytely for colonoscopy/ flex sig prep! (LOL)
  17. I have learned to laugh at myself.
  18. I have learned to make sure my hospital room has a window! (if you are stuck in a hospital room for an extended stay, this is a MUST!)
  19. I have learned that taking a shower can be the most exhausting thing to do depending on the day.
  20. I have learned to admit to my husband that yes, I do poop and pass gas. (horrifying, right!? Who knew girls do such a thing! LOL)
  21. I have learned to never, ever, ever, ever pass gas while having a flare-up! (Whoops! Clean up in aisle 3!)
  22. I have learned how to run from the back corner of Target, up to the front where the bathrooms are, maintaining clenched buttocks to avoid an accident. (it is inevitable that you will be hit with the uncontrollable urge at the furthest point from the bathroom.
  23. I learned to keep a toddler’s training toilet in the car with me on long trips in case I really needed to stop but was miles away from a gas station or rest stop.
  24. I also learned to keep blankets/towels in the car to block out the windows while needing to use the toddlers’ training toilet.
  25. I have learned how to meditate.
  26. I have learned how to let go and let higher powers and energies be in control.
  27. I have learned how to not pass out when getting shots, IV’s inserted, labs drawn…..a must when your main remission-inducing med is administered via IV every 4-6 weeks for a total of 3-4 hours each time.

For those life lessons I am eternally grateful. See UC? You never had a chance to win this battle because I am a warrior! You certainly picked the wrong girl to mess with!

(I will continue to add to the list, as I am sure I forgot some and will continue to learn more and more every day!)

What have you learned?


My Journey with IBD – All wrapped up in a short video!

I created a video made up of photos from throughout my journey with Ulcerative Colitis on iMovie. After a fundraiser that I organized, I had several people ask me to share it so that they could watch it again and/or share it with someone. I would be happy to do so!

I found myself getting very emotional while watching it at the fundraiser, in front of 50 people. It is hard to look back and remember the rough, painful days but it makes it so much sweeter to think of where I am today. I think back to this quote when I look back on my journey…

Here is my video! Please let me know what you think!

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#21 – That Other “F” Word – Fear

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As an Ulcerative Colitis Warrior, it is very difficult to say this, but we all have fears. We all face those scary times when we would rather just curl in a ball in the corner of the room and wish everything bad and scary would just go away and we would wake up from this terrible dream. As warriors, we don’t often let on that we feel this way more often than we would like to admit, but it is true. It is scary to see blood in the toilet, especially in the massive amounts that many of us, including myself, have seen. It is terrifying to take all of these immunosuppressant medications and wonder if the side effects outweigh the negative aspects of the disease we are dealing with or vice versa. It is sometimes staggering at how often many of us have come so very close to organ failure due to dehydration or other terrible things caused by our IBD diagnosis. But yet, we throw ourselves forward, because we know that staying where we are is most likely worse than where we are heading. Fear. An unspoken feeling, yet it is so profound.

Many of us diagnosed with IBD also struggle with anxiety, depression and guilt. We become anxious because the IBD (Crohn’s or Ulcerative Colitis) takes over every thought. Rather than enjoying time with friends and family, we are usually worrying about what we are eating and/or drinking and if it is going to have a negative effect on us. We are also consumed with locating the nearest bathrooms at all times. Need a bathroom ASAP???? Ask an IBD’er. We are sure to know where it is and what the best route is to get there. Anxiety.

Many of us suffer from depression because it is easy to fall into the pity party trap. More times than not, IBD affects our ability to work and a lack of purpose is a dark alley leading right to the depression dead end. Feeling as though you are chained to a toilet is not a healthy way to live, both physically and mentally. Depression.

Guilt. This is caused by the fact that our IBD wipes us dry of any and all energy, leaving us drained on the couch while our children beg for us to play with them. Canceling plans with friends and family because we are too sick or tired or both to even move, let alone hang out at that awesome restaurant. Avoiding social situations because we are terrified to eat or drink anything for fear of what it will do to our insides, ultimately leading to that extremely embarrassing situation where we clog the toilet/ leave a smell so awful people rudely complain aloud/ spend more time in the bathroom than with the friends and/or family we were supposed to be spending time with…Guilt.

So it shouldn’t be a surprise when I say that the other day, I had a complete break down.

There. I admitted it.

I had a sobbing, ugly crying, nose running, mascara running, messy break down. It started out as a normal evening. My hubby and I put the kiddos to bed. We came back down to watch TV and I was scrolling through Facebook when a post on a support group popped up that caught my attention. It was about typical recovery things for a J pouch surgery, which as you know, I am supposed to be getting as soon as I can drop this God forsaken 30 pounds that the Devil’s tic-tacs (prednisone) seem to have super glued to my waistline and thighs during the year that I was on them…anyway…I was reading this seemingly innocent article put out by a hospital in California about J pouch recovery. Suddenly, my hubby asked me if I was ok. I was all confused and was like, “Yea, I am fine. Why?” He said he was concerned because I was crying – and not just a tear drop falling down my cheek, no. This was waterfalls of tears flowing from my eyes, smearing my mascara, and I was completely unaware of this happening. As soon as the realization of my tears hit me, it got uglier. Sobbing, loud breaths, blubbering and stammering…ugly crying. I came face to face with my fear while reading that article. It was not written by a J poucher who had a terrible experience. It was not written by someone trying to talk people out of the J pouch procedure. It was an informational article put out by a hospital. It sent me into a panic spiral.

I emailed my amazing nurse, Michele Rubin at the University of Chicago Hospital with my concerns. Why was I freaking out? Well, as I told Michele in my email:

“I must admit I’m second-guessing my choice on the J pouch. I love the idea of not needing a bag, but the idea of needing to go to the bathroom so many more times a day until my body is retrained is heartbreaking. Before Rosie came into my life, I was going to the bathroom anywhere between 20 and 30 times a day. I felt like a prisoner in my house, or the nearest bathroom whichever came first. Last week, I was able to chaperone by son’s kindergarten field trip. Something I never ever would’ve considered before surgery. I was also able to do the CCFA walk this weekend and didn’t need to stop to go to the bathroom once. That was so amazing to me. It felt like a really big personal accomplishment. Which terrifies me because if I have the j pouch surgery, I know that I will become at least a temporary shut in again… At least until my body is retrained. But this really worries me. I don’t really have the medical leave needed from work in order to allow my body enough time to heal and retrain before needing to go back to work.
I think the thing that really got to me was that I was feeling doubt and a little bit of nervousness when I started thinking about having the J pouch. I didn’t have any doubt and they didn’t have any nervousness about the first surgery because I knew that Rosie would give me so much of an improved life that this would all be worth it. And it has. I am worried that the J pouch surgery will take this feeling away.”
My amazing Michele called me on the phone after hours one night after reading my email to speak with me personally. Just hearing her voice made me relax. She calmed me down and quieted all of my fears. We talked about the pros and cons of keeping Rosie as my lifelong sidekick (literally – LOL) and we talked about the pros and cons of continuing on with the next two surgeries and getting the J pouch. She reassured me that I had plenty of time to weigh both sides and make my decision in my own time. No pressure to go either way. The decision is ultimately up to me she told me. If I am comfortable with Rosie and feel fine about her being by my side (again with the ileostomy humor….I cannot resist!) that I am definitely able to do so. If I want to pursue the J pouch and have the remaining 2 surgeries, I can schedule those when I am ready – physically, mentally and emotionally.

I think the moral of the story here is that fear will consume you if you let it. Everyone is touched with fear from time to time. How we handle it is what defines us. The more educated you are, the more informed your decisions about anything in life will be. The more informed you are, the more control you will feel, which I think ultimately leads to fear – the lack of control. We need to meet that “F Word – Fear” with another “F Word – Faith” and have a little faith our healthcare providers, our friends and family and most importantly – ourselves. If you are feeling anxious, depressed, guilty and/or fearful about anything, please talk to someone. It is amazing what simply speaking the words aloud to someone can do. Replace the bad “F Word” with the good one!
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#20 – These Are A Few Of My Favorite Things!

I have had a few people ask me what my favorite things are…Let’s see…

Raindrops on roses and whiskers on kittens.
Bright copper kettles and warm woolen mittens.
Brown paper packages tied up with strings…
These are a few of my favorite things!

Oops! I got a little sidetracked! I think it is obvious to anyone who knows me or knows this blog, knows that I love everything to do with music! I was a HUGE choir and theater dork and even starred as Maria in the Sound of Music. Forgive me for getting sidetracked!

Focus…..ok, so as I was saying…many readers and fellow IBD warriors have asked me what are my favorite products and other IBD related items? I am happy to share!

***NOTE*** I am not a paid spokesperson for any of these products, nor do I receive any loyalties for listing products and/or groups in my blog. With that being said, I would not be opposed to being added to a payroll as a spokesperson or employee of any of my favorite things! Contact me at with job offers or advertising deals! LOL!

The Toilet Paper Princess’s Favorite Things!

Screen Shot 2015-06-26 at 1.25.39 AMI wear a BeBand every day. I need to use a convex bag with a thin belt attached to it due to Rosie, my stoma, so I am not really able to use many of the other popular brands like Stealthbelt and others. Instead, I wear this band marketed towards pregnant women and sold in maternity sections of stores like Target because it holds my bag and belt nicely in place against my body, avoiding any slippage of bunching. It keeps a nice flat (well, as flat as my belly can look at my current weight – thank you prednisone) profile and makes me feel more confident while wearing tighter clothing. I prefer the nude color one because it doesn’t show through my clothing. I wear it under my shirts and tucked into my pants, although I know it could be worn over your pants as well. My reason for wearing it is to help disguise the bumps and clumps that may be caused by my ileostomy bag.

*Drip Drop
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I cannot even begin to explain how much I absolutely LOVE Drip Drop! I first heard about it on a support group I belong to. I went out and found some and tried it. What a difference it made! Then, after my first of three j pouch surgeries, I met with a dietician who specializes in IBD diets, who recommended Drip Drop and I was so excited to hear that she endorsed it too!

Ok, so what is it?! It is an Oral Rehydration Solution. (Um…..huh?! Plain English please!) It is a powder mix similar to Crystal Light, with the rehydration power of Gatorade, Powerade, Pedialyte, etc without all the sugar! It is a known fact that those of us with IBD, especially those of us with ileostomy bags and j pouches are much more at risk for dehydration. This little packet of powder (in Berry or Lemon flavor) is jam packed with nutrients that can prevent and even treat dehydration. See their page about the benefits for those of us with IBD here.

It was created by a Dr at Mayo. He wanted to be able to treat people  – namely children – that he saw on a mission trip overseas who were severely dehydrated without the use of expensive IV equipment and treatments. These little powder packets pack an anti-dehydration punch similar to an IV treatment for dehydration.

You can get Drip Drop online and locally at CVS and Walgreens. It is located in the baby aisle, near the pedialyte but it is NOT just for babies! I love it and swear by it!

*Facebook Support Groups for IBD
Screen Shot 2015-06-26 at 1.33.01 AMThere are SOOOOOOO many Facebook support groups!!!! Search for IBD, UC, Crohn’s and you will find tons of groups. Now, not all groups are created equal…believe me! Find the one(s) that are best for you! These groups can be incredibly helpful when you need to vent, ask a question only other IBD Warriors would understand, give/get advice about products, and just plain support you. One group that I am super in love with is the one that I am an admin on! It is supportive and any trash talking is forbidden. Feel free to check it out!! It is called Crohn’s & Ulcerative Colitis The Voice of One Becomes the Voice of Many. The key, as I said, is to find the group(s) in which you feel supported, not threatened. Your peers can help you fin the humor in situations, empathize with you, support you, and seek your support as well.

*GI Monitor
Screen Shot 2015-06-26 at 1.36.25 AMOk, this app (available for android, apple and desktop use) is quite possibly the best thing there is! AND IT IS FREE! I would use this app religiously before my surgery to remove my colon. This app helps you keep track of the number of BM’s you have in a day, what consistency the BM was, how much blood accompanied the BM, the urgency level, pain level, etc. It allows you to add personalized symptoms, keep an updated list of meds, track your meds, keep track of your meals to determine triggers, track stress levels, and more! It calculates a quality of life rating based on the information that you enter.

My absolute favorite thing about this app was that it has the capability of sending a PDF report of your information to your email, where you can print it out and bring it with you to your GI appointments. (or email it directly to your healthcare provider if you so choose!) This was SOOOO handy in answering those typical GI questions of how many times a day are you having a BM? How much blood are you passing? And so on and so forth. I used it while I was in the hospital during my 30 day stay as I mentioned in the beginning of my blog entries. Yes, I know that the poor nursing staff had to document it too, but this way, when my GI came for the daily check in, I had the info right there at my fingertips, literally! LOVED.IT. and my GI loved it too! BEST.APP.EVER!

I was shocked while using this app to find out I was having up to 30 bathroom visits a day at my worst and that EVERY single time was accompanied by blood and pain with CRAZY urgency. My quality of life plummeted at that point down to a 1.9 out of 10. That was eye opening to me. My life had become so centered around bathrooms that I didn’t realize how serious it was until that number – 1.9 – was staring me in the face. Can’t deny the reality of your current situation when that is all up in your face like that. Talk about a wake up call. But then, I was able to see the quality of life rating rise up and rise up and rise up as I began to tackle that flare up and go into remission. Amazing. And as soon as that number began to fall again, I didn’t hesitate to contact my GI immediately that time!


*Girls With Guts

Screen Shot 2015-06-26 at 1.52.27 AMI just love the name of this group, and that is honestly what drew me in! Once I started looking into it more, I found that I could connect with this group. Their mission statement on their website is, “The mission of Girls With Guts is to empower girls and women with Inflammatory Bowel Disease (Crohn’s Disease & ulcerative colitis) and ostomies to share their stories of confidence and to promote self-esteem.” Plus, they have an amazing selection of clothing and other IBD related paraphernalia!!!!!  (I love the sweatshirt I got from them!) They have a section where you can submit your IBD story, watch videos, participate in their new Girls With Guts Forum and find what they call Butt Buddies groups (IBD groups for people who hate support groups) in your area! Check out their site for programs that are available!

*The Great Bowel Movement

ask me about my colitisUm, hello… can you NOT love this based on the creative name alone?!?!?! Total props to whomever came up with this one! Anyhoo, the mission of the Great Bowel Movement (GBM) according to their website is, “The Great Bowel Movement is a social awareness movement with the goals of empowering patients associated with Inflammatory Bowel Disease (IBD) including Crohn’s Disease and Ulcerative Colitis, as well as J-Pouch and Ostomy, to embrace their disease, be proud of their experience, and spread awareness throughout their communities.”

They sell amazing shirts that BEG to raise awareness wherever you wear them! I currently have two of their shirts, the IBD Empowerment Tee and an “Ask Me About My Colitis” shirt! They host oodles of events and get togethers including a summer camp! Go to their website for more information!


Screen Shot 2015-06-26 at 2.20.48 AMOk, so if you remember, I was losing quite a bit of hair a while back. This was possibly due to vitamin deficiencies and/or medicine side effects…regardless of the reason, my hair fairy recommended using Nioxin. Ah-may-zing results! I use the shampoo and conditioner from System 2 for noticeably thinning, fine, natural hair. If you color or perm your hair, you will need to use a different system, but there is a little helper tool on their website that can help you determine which system is right for you. It smells great – minty – a great pick me up in the morning! Plus, it has a cool, tingly feeling that I love! Best part?! It actually worked! My little spotty patches of crazily thinning hair filled in and were no longer a problem! No more handfuls of hair down the drain after I started using Nioxin! SWEET!


Screen Shot 2015-06-26 at 2.27.39 AMQuite possibly one of my favorite products out there! Not only is the name ingenious, but it actually works!!!!! I used this prior to my surgery, and still use it now when I empty my ileostomy bag! (and if you have an ileostomy bag, you KNOW there is not much that can disguise that smell!) It is simple.
1. Spray a few quick sprays of the Poo-Pourri in the toilet bowl before going.
2. Go to the bathroom/empty your bag.
3. Flush.
4. After washing your hands, leave the bathroom feeling confident that your poo doesn’t stink!

Their online commercial for Poo-Pourri is too hilarious not to share! (Note – there are some naughty words/sayings in here for those of you reading this with kids or with kids nearby. Don’t say I didn’t warn you!)

I keep a bottle in my purse at ALL times. I keep a bottle handy for the staff bathroom at my school where I work. And a keep a bottle in all three bathrooms in my house. It comes in several scents with clever names! (Call of the Wild, Deja’Poo, No. 2, Poo La La and Royal Flush to name a few!) It is relatively cheap for the amount of embarrassment it saves you from! I get mine at a local shop, but you can also order online!

*Rebecca Zamolo

Screen Shot 2015-06-30 at 10.49.05 PMThis girl was a favorite of mine well before knowing that she had UC. She is a You Tube celebrity and she is hilarious. After dealing with UC for years, surgery became her only choice and Rebecca decided to use her amazing You Tube platform to tell the world all about Ulcerative Colitis, her battle, her surgeries towards getting a J Pouch and her triumphs. She began to vlog her experiences throughout her surgical journey. She made a funny parody on “Dick in a Box” from SNL. She called her pardoy “Poop in a Bag” and also created her own movie, available for purchase on Vimeo here. This girl is gorgeous and a true fighter and advocate. I am thankful to call her a fellow UC Warrior. I purchased her Vimeo movie and was touched. Please consider watching it. Here is the preview…

*Shadow Buddies

Shadow Buddies

According to their website, “The mission of the Shadow Buddies Foundation is to provide emotional support through education regarding illness, disability, or medical treatments. The foundation accomplishes this mainly through unique programs designed to enhance the lives of children and adults and increase the compassion and understanding of differences.” It goes on to say that, “Shadow Buddies are condition-specific dolls designed to be a friend “just like me” for seriously ill or medically challenged children. The Buddies not only provide comfort to the ill child, but also provide physicians a hands-on method of educating newly diagnosed children and their families about a particular disease or medical condition and its treatment.” They come in three different skin colors and are available in both boy and girl dolls for each condition. With nearly 30 different dolls, they are sure to have one that you are looking for!

These little dolls are amazing when it comes to helping children understand that they are not alone. It has also come in very handy for me, as a UC Warrior with an ileostomy and two young children and three nieces and nephews. Rosie, as I named my doll after my stoma by the same name, has helped the children understand my ileostomy and the reason I need it. It even came with the cutest little ileostomy bag in the whole world!

Ok, so there you have it! Some of my absolute favorite things related to IBD! Have you used any of these products?! What is your experience? I would love to hear! Please leave a comment below! Thanks for reading!

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#19 – My Supportive Soundtrack

Screen Shot 2015-06-17 at 1.17.44 AM

Music has been a HUGE part of my life for as long as I can remember. I was a BIG choir and theater dork since elementary school! If you point me to the karaoke bar, you can bet that I will turn in several slips to sing, and will probably try my best to wrangle you into singing with me too! (Come on, it’s fun! You know you wanna… which song should we sing?!)

The reason I bring this up is because music is so incredibly important to me. I connect spiritually with music. I meditate with music. I release stress with music. I energize and pick myself up with music. I do not think I could live in a world without music.

I created a list of songs that have been meaningful for me throughout my battle with Ulcerative Colitis, from diagnosis through surgery and recovery. Some of the songs remind me of the struggles I have overcome, while some pump me up and lift my spirits! Remember, some of these songs hold personal meaning to them for me, but I am happy to share all of the names with you! I have had so many requests to share my list, so here goes!

My absolute must-haves!
Titanium – David Guetta & Sia
I Believe – Yolanda Adams
Strength, Courage and Wisdom – India Arie
Overcomer – Mandisa
Hope – Natasha Bedingfield
Fight Song – Rachel Platten
Shake It Off – Taylor Swift
My Best Days Are Ahead of Me – Danny Gokey
Try – Colbie Caillat
I Lived – OneRepublic
Roar – Katy Perry
Breathe – Ryan Starr

More Stellar Soundtrack Songs!
Just the Way You Are – Bruno Mars
Flat on the Floor – Carrie Underwood
Human – Christina Perri
You Can Let Go – Crystal Shawanda
Hope in Front of Me – Danny Gokey
Warrior – Demi Lovato
No One is Alone (Glee Cast Version) – Glee Cast
Don’t Stop Believin’ (Regionals Version) – Glee Cast
Brave – Idina Menzel
Defying Gravity – Idina Menzel
Keep Breathing – Ingrid Michaelson
Little Bit of Feel Good – Jamie Lidell
That’s What I’m Here For – Jason Castro
I Won’t Give Up – Jason Mraz
Ave Maria (LP Version) – Jewel
Medley – (A) Go Tell It On the Mountain (B) Life Uncommon (C) From A Distance – Jewel
Stronger Woman – Jewel
Hands – Jewel
Life Uncommon – Jewel
With a Little Help from My Friends – Joe Cocker
A Broken Wing – Jordin Sparks
Stronger – Kanye West
Don’t You Know You’re Beautiful – Kellie Pickler
Catch My Breath – Kelly Clarkson
Invincible – Kelly Clarkson
Stronger (What Doesn’t Kill You) – Kelly Clarkson
For Good – Kristin Chenoweth & Idina Menzel
Blessed – Martina McBride
I Run for Life – Melissa Ethridge
The Climb – Miley Cyrus
Hangin’ Tough – New Kids On the Block
I Believe I Can Fly – R. Kelly
Stand – Rascal Flatts
Brave – Sara Bareilles
Angel – Sarah McLachlan
SuperGirl – Saving Jane
One Girl Revolution – Superchick

– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –
So…what do you think?! Do these songs strum at your heartstrings and get you pumped up? Leave a comment below with your thoughts, and songs that you would add to my Supportive Soundtrack!


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