chronic illness

My Endometriosis-Specific Ultrasound

I promise I had no intuition of dropping off the planet the last two weeks nor did I anticipate not finishing out Blogging for Endometriosis the way I had planned. I have spent so much time beating myself up feeling like there was so much more that needed to get done or that I should have been able to get done. I have looked in the mirror more than once and wanted to put a big L on my forehead. But I am trying to show myself grace. The same grace that I would be offering anyone else who was in the same situation and I am allowing myself to fully accept it.

That said, I do apologize for going AWOL on the last half of endo awareness month! 2014 has most definitely not gotten off to a great start and it seems like the more time that passes, the bigger nosedive my health seems to take. Hopefully all of the recent doctors visits, procedures, and consults will lead to a turn around!

Last week, I had my endometriosis-specific ultrasound. From all of the information that was given to me prior to the ultrasound, this is new technology that is currently only being offered in two locations in the US (here in Charlotte and at the Mayo Clinic in Arizona). This type of ultrasound allows endometriosis lesions and implants to be more easily seen during the ultrasound which can aid in diagnosing and treating endometriosis by not only being a non-invasive way to monitor the endo but also helps provide a guide if surgery is necessary by showing where trouble spots are located. To be able to get a clearer picture of what is going on, this ultrasound requires a bowel prep.

This was all of the information given to me before the ultrasound beforehand. I’m not sure if I had just built everything up so much in my head or what but I was completely let down by the experience. Maybe it was because it was brand new technology or because it is only offered so few places but I just went in with the grand idea of what the ultrasound would look like or how detailed the results would be. Honestly, if I hadn’t been told that this was an endometriosis-specific ultrasound, I wouldn’t have known it was different than any other pelvic ultrasound I have had in my doctors office. There were no large implants seen but smaller implants and scar tissue are still not able to be seen so I felt like we were really no better off than we were when we started. I definitely cried but the doctor reassured me that in no way was my pain being discounted and really validated my feelings and my experience. So far both doctors that I have seen at the Women’s Institute have been great.

After reading the ultrasound results and going over my medical history and ops reports, the team would decide which direction they thought would best to treat my case. If they thought surgery would be the best option, they would call to set me up with Dr S. If they thought an alternative treatment option (such as medication, physical therapy, etc) would be the way to go, they would set me up with Dr M (who did my ultrasound). They called yesterday and I will be seeing Dr S on Friday! I’m both anxious and relieved because I finally feel like we are taking a step toward finding relief. I’m not sure what the game plan or time line is but will definitely keep you updated!

In the meantime, I am prepping for my repeat colonoscopy tomorrow! Including this one, I have done four bowel preps in 6 weeks. Not fun. And because my colonoscopy had to be aborted in February because the prep was ineffective, I get to do a double prep for this one. Awesome. I had to drink 2 bottles of magnesium sulfate this morning and have to drink 4 liters of NuLyte between tonight and tomorrow morning. I want to throw up just thinking about it and I have to start drinking in 15 minutes.  I just keep reminding myself that this time tomorrow it will be all done and I shouldn’t have to do another prep for a long, long time! Keeping all fingers and toes crossed!

Tomorrow’s start time is 12pm so if you happen to glance at the clock around lunch say a prayer or send some vibes!

chronic illness

The Bowel Prep Survival Kit

Bowel Prep Survival Kit

Unfortunately I am scheduled for a repeat colonoscopy & EGD tomorrow which means I get the pleasure of attempting to survive completing a bowel prep.  This will be my 4th (and unfortunately not my last) time having to endure such torture.  So I thought I would share my wisdom that I have acquired over the years with you wonderful readers (after all at one point or another we all end up having the opportunity to share the joy of a colonoscopy).

This is what I call my Bowel Prep Survival Kit:

Bowel Prep Survival Kit

Essential items include:
1-Bowel Prep Meds:  These come in different varieties but all work basically the same.  If you have to mix the powder with liquid to drink, I highly recommend mixing it ahead of time and putting it in the fridge so that it gets really cold.  It seems to make it go down a little easier (you can mix and store solution up to 24 hours before your start time) Some people recommend using a straw. Whatever gets it down the fastest!
2-Apple Juice: Its a clear liquid with some sugar to keep blood sugar levels from completely dropping plus give you the sense that your stomach is full. White grape juice is approved as well – just no red or purple juice.
3-Clear Liquid of your choice:  For every 8oz of the bowel prep mix you drink, you chase it with 8oz clear liquid of your choice such as Sprint, Mt. Dew, 7up, light colored flavors of Gatorade, and sweet tea.  Be careful when making your choice!  Short story:  I used to love love love the yellow Gatorade but the bowel prep mix for my first colonoscopy tasted exactly like it so now I gag every time I smell the stuff.  So sad.  So you may want to stick to Sprite instead of your beloved choice just in case you developed some type of warped connection between the two (or maybe I am just a complete weirdo for making such a connection).
4-Popsicles:  My favorites are banana pops and lemon italian ice. Both are on the approved list and believe me you get tired of Jello pretty quick. I have always stuck to banana pops in the past but discovered lemon italian ice on this trip to the grocery store for prep supplies! Jello is also on the approved list. Colors to avoid are red, blue, purple, and green (basically any other color than clear or yellow) as they can dye your intestines which makes accurate viewing difficult. Popsicles must not contain yogurt or ice cream.

5-Moist Wipes:  Your butt will thank you.  I promise.

Items not pictures but highly recommended: Reading material, a stool to put your feet on (not sure why this helps but it does), and air freshener.

Of course clear chicken or beef broth (without noodles or rice) is on the approved list, but I will stick to lemon Jello and banana pops thankyouverymuch.

Now if you ever get the news that you will have to have a colonoscopy (or must have a bowel prep for some other type of surgery) you can’t say you weren’t prepared 🙂

Have you had a colonoscopy or have had to complete a bowel prep for another reason? Would you add anything to this list?


P.S. Be a spoonie girl scout & check out the Hospital Survival Kit & Flare Survival Kit to be prepared for what else life with chronic illness may have in store!

chronic illness

Survived My EGD!

It is that time of year to have my EGD to monitor Celiac disease. I had my EGD (upper endoscopy) last Friday (the 6th not the 13th!). Most people with Celiac can take the blood test every year to check antibody levels to access their Celiac disease but I’m one of the lucky people who don’t respond to the blood test (hence, why my diagnosis was missed for five years). Instead, every year I will have an EGD to monitor the progression (or healing) of my disease.

Thankfully the only prep for an EGD is to not have food or water after midnight the night before your procedure (unlike the prep for a colonoscopy which you can check out all the details of my bowel prep survival kit). I will say it is challenging for me because usually the first thing I do in the morning is get something to drink. I am like my mom in that typically wherever I am, there is a drink also. The other challenge is that I have really bad veins. Beyond horrible veins. When I know I’m having blood work done, I usually chug water on the way to the doctor to help make the draw a little easier (only one of my many nurses can actually take my blood without using a butterfly needle). Its not perfect but I will take it over spending 8 hours on the toilet.

I was quite nervous on the hour drive to the hospital. This year’s arrival time was 8:30 so it was late enough that we could drop Abby off at school but early enough that I wouldn’t starve (last year’s arrival time was 6:30 which meant a 5:15 departure from home and it just wasn’t pretty). The waiting room was packed when we arrived and evidently whoever arranged the furniture didn’t believe in leg room. Fortunately it wasn’t long before they took me back to get ready.

My nurse was very pleasant and sweet as pie. I put on the fabulous gown and booties and prepared for the worst part of the whole ordeal – the IV. Seriously, nothing else about the procedure scared me except the IV. Earlier in the week, I was in the ER for a migraine and the nurse there blew my only two decent veins so I was concerned. The first attempt was not successful and thankfully it didn’t take her long to admit defeat as she realized just how crappy my veins really are. She was going to get the anesthesiologist to take a look. We wrapped my arms in heat in hopes to plump my veins up a bit since water was out of the question.

While I waited for the anesthesiologist, Hubs got to join me. He gave me a hug, rubbed my shoulders, and then scared the crap out of me by telling me that if they can’t get an IV in your hand or arm that they will use your foot (um…ouch?).  Thanks babe. The anesthesiologist (who also happened to have Celiac) came out a few minutes later and I am thankful to report that no feet were harmed in the insertion of the IV. It didn’t take her long to realize the challenge so the first thing she did was numb my hand and grab a smaller needle (praise the Lord!). I know she didn’t get me on the first stick but thankfully couldn’t feel the pain. Hubs, on the other hand, watched and almost passed out.

Once the IV was in, all systems were go! They wheeled me in the procedure room and I chatted with the doctor for a moment before the procedure started. The 2nd worst aspect of having an EGD is the spray they use to numb your throat. It has to be the most disgusting thing out there and of course its the last thing you remember before going out and the first reminder you have upon waking. The procedure was over in 10 minutes.

I woke up in recovery feeling a little crampy from the gas. I scored another good nurse and she brought tissues and a coke upon my waking (double score!). Dr. P stopped by and told me that everything looked good but he would know for certain when the biopsy results came back. Within 15 minutes, I was wheeled down to the car and we were on our way home! Hubs decided to give me my Mother’s Day present early to help me recover  – 3 seasons of NCIS on DVD! I’m not sure of a better way to heal than a hefty dose of Mark Harmon.

Biopsy results have come in and I am happy to report that my year of being gluten-free has worked! My intestines are healing! I’ve always had the luck of falling into the crappy statistic category (like when the doctors at CEC told me that I only had a 9% chance of my endo returning after my 3rd surgery – who fell into that 9%?) so I was terrified of being in the small percentage of Celiac patients who were non-responsive. I am so glad to say that I have finally become a part of a good statistic! So skipping Krispy Kreme while its been tempting has totally paid off!

My discharge instructions read: gluten-free diet for life. I think I can learn to handle it (especially when I keep finding recipes like these shirley temple cupcakes). Now only 11 months 2 weeks until my next EGD!