Back on Track

Back in February, I posted that I would be adding more content to this blog soon. I am very sorry to those of you who have kept up with this blog, and I thank those of you who messaged me to check on my well-being. I really do have some great readers, followers, friends, and family!

Things lately haven't been well for me, physically: I've lost 7 pounds since last Wednesday, I'm in constant pain (and the painkillers make me feel way too loopy), depression is making me crabby, I can't eat anything besides simple carbs, and I'm just so done with this flare-up!

Here's the latest update on my particular surgery case... if you recall, the surgery was originally supposed to happen in December. Then I got SHINGLES, so it was postponed. A few other things happened in between the last few months that made the surgery get postponed again, one of them being getting a new surgeon. My GI doctor, whom I trust very much, strongly recommended a different surgeon, one who specializes in Inflammatory Bowel Disease surgeries. The previous surgeon was a general surgeon, so I was more than happy to oblige for the second opinion.

I met with the new surgeon today for a consult. She is wonderful! She answered all of the questions that my boyfriend and I asked, and explained/showed us exactly what she's going to do. There's no longer any mystery surrounding this surgery; I am fully aware of what to expect.

The plan is to remove my ileum (the portion of the bowels where the small intestine meets the large intestine), as it is actively diseased. She'll re-sect the small and large bowels back together, but I just won't have that "flap" of the ileum anymore.
She'll also be removing a portion of my Sigmoid colon (the "S" shaped portion of the large bowel, close to the rectum). This particular area has been the source of active Crohn's since I was first diagnosed. I am actually EXCITED to have that part removed!

Finally, she'll detach the fistula that has invaded my bladder, and remove any additional diseased areas. The bladder may need a stitch or two, but should heal up fine on its own after surgery (with proper care, of course).

While the current plan is to re-attach and have full-function of my bowels after the diseased portions are removed, there is a small chance that I may have to have a temporary stoma and colostomy bag. I'll make a post about these appliances soon, as it's fairly common for Crohnie's to have them. This news doesn't bother me at all, but for some people, the thought of having what is essentially a bag of poop hanging off of their body is a bit hard to consume.

The best part of the meeting with the surgeon is when she said what I have wanted to hear for so long: this surgery will most likely afford me LONG-TERM REMISSION!!
With that said, remission requires care and maintenance on my part and my GI doctor's part, but I may just have a period of life ahead of me that is pain-free, bloat-free, bloody stool-free!! It's no secret that Crohn's Disease can and will come back in most patients, sometimes in a different area of the digestive system. But with proper maintenance medication and personal care, I hope to fend off any return of CD!

We're looking at either May 6th or May 14th for dates of surgery; that will be determined by the coordination ability of the scheduler at the hospital. Since a urologist will need to assist with the bladder portion of the surgery, this will be a highly choreographed event. The whole thing should take 3 to 4 hours. Planned hospital stay of 3 to 5 days, if everything goes well. I'll be facing about two months of full recovery time after surgery, but I'm hopeful that it will go quickly.

Not a whole lot of "funny" to write about right now, given my current physical and mental status. But I promise you, my funny bone is still fully intact and will be droppin' fat jokes again soon! In the meantime, check out some of my previous blog posts to learn and laugh!

Prepping for Humility

It's a little strange to think that I was supposed to spend today on a clear-liquid diet, followed by colon cleansing preparation for surgery. Now that surgery has been postponed, this gave me an idea of something helpful I can post about - preparing for colonoscopy / sigmoidoscopy / intestinal surgery.

If you've ever had a colonoscopy, you will probably nod in agreement that the worst part of the whole process is the preparation. The procedure itself happens while you are under anesthesia, so you wont feel or remember anything. But the day before the procedure, I'm not going to lie...

IT. IS. HELL.

I'll give you my personal experiences (I've had 3 colonoscopies, 1 sigmoidoscopy, and a few upper endoscopies just for fun), and the preparations for each all produce the same results, just with different preparation mixtures.

Step 1: I spend the week before the procedure eating and drinking only simple foods that are easy to digest and won't upset my guts. This supposedly ensures the prep will be easier. I say "supposedly," because I don't really think any type of "diet" will make the prep more bearable.

Step 2: The day before the procedure (or starting 24 hours before), I am restricted to a clear-liquids only diet. That means if you can't see through it, you can't drink it. And absolutely NO FOOD. Some of the recommended drinkables are:
Water (duh)
Clear soda
Broth - chicken, beef, or vegetable
Apple juice
Fruit-flavored beverages (Kool-Aid, Crystal Light, etc.)
Jell-O
Popsicles
Hard candy
Coffee (YAY!) or tea, WITHOUT cream (sugar is OK)

This diet has been known to cause mental insanity in those who love food**. I recommend keeping to yourself for the entire day, because things are only going to get worse. That's not intended to scare you, I'm just being honest!

(**I made that up.)

Step 3: At a particular time of the afternoon or evening that the doctor has already determined, chemical prep begins. I have used three different types of colon prep, all of which provided the same results.
 

Golytely: This is a 1-gallon bottle you get by prescription only. This is probably the oldest, most-common colon prep solution available. I even recall my grandmother using this when I was but a wee girl. When you get the bottle, it's mostly empty with some powdered junk inside. You fill the gallon jug with lukewarm water (yes, lukewarm - not cold, not even room temp. LUKEWARM). Once the mixture is completely dissolved, you drink it. Sounds easy enough, right? Let me see if I can explain what it's like, using my education and wordsmithing ability:

It's really yucky.

You have to drink this entire gallon of piss-warm, synthetic-salt-water tasting liquid. And yes, one size fits all, apparently. Whether you're a 400lb person or a 90lb person, you have to drink ALL of it. And, to make things worse, you have to drink all of it WITHIN 2 HOURS.

After the first glass or two, I started hearing the sounds of beached whales in heat coming from deep within my guts. After the third glass, I felt my bowels literally moving.

A little piece of advice while doing colon prep: don't trust that fart. In fact, don't trust that cough, sneeze, or giggle either. Just get to a toilet ASAP.

As you can imagine, the remainder of the 2-hour chug-fest was spent mostly on the toilet, with occasional breaks to drink more Golytely. I tried sucking on hard candies before taking a swig to mask the horrific taste, but chemicals are stronger than sugar, and there is no hiding that flavor.

I had almost finished the jug within the 2-hour window, and my body had completely turned against me. I was now gagging at every sip, I was extremely bloated and feeling feverish - all while continuing to visit the royal bathroom throne endlessly. I couldn't bring myself to finish the last 8 ounces or so, and I convinced myself this was okay. I believed there was no possible way for my body to handle any additional internal cleansing.

Turns out, it was okay. In fact, my doctor told me the next day that they don't actually expect everyone to drink the whole jug. They prescribe it that way, though, so you will drink as much as you can force. Those bastards!

Fleet Phosph-Soda: Don't be confused by the word "soda" or by the "ginger-lemon flavor" description. There is nothing resembling gingerale in this package. NOTHING. This stuff is just a concentrated version of the Golytely jug, and ultimately, you're going to drink the same amount of liquid.

This 3 ounce bottle packs a punch. And they give you TWO of them. 6 ounces seemed like such a relief from that giant gallon jug, until I read the instructions. I had to mix these bottles with approximately ONE GALLON of water.

The only bright side here is that the water could be as cold as you desire. Since this stuff is already in liquid form, it mixes nicely at any temperature.

It tasted the same as the Golytely, except it had a slight pharmaceutical sweetness to it. That made it taste even worse, in my opinion. It was a little easier to chug ice-cold liquid, however, and that did make the prep about 0.0001% easier than the Golytely prep.

The process was about the same - over a 2 hour period, you had to finish both bottles with the respective amounts of mixed-in water. Only, this time I actually prepared myself to spend the entire evening in the bathroom, by having reading material, a blanket, and even a pillow to place behind my back. I highly recommend these items, as well as your phone, tablet, or a laptop, so that you can communicate to the world the exact torture you're experiencing.

Suprep Kit: Finally, someone in the pharmaceutical industry must have had a colonoscopy and realized how appalling and disgusting the prep is. Because this product, Suprep, was a saving grace!

This kit comes with everything you see above, including the cup. The bottles of liquid are just 6-ounces each. This type of prep is a two-step process: you do half of the prep the night before, and the other half the morning of your colonoscopy.

My experience with this product was mostly better than the previous preps. In this kit, you drink one of the bottles of liquid STRAIGHT. It's not necessary to mix it with anything. It doesn't taste great, but it doesn't taste as horrible as the Golytely or Fleet preps. After you drink the bottle, you drink several cups full of plain water. Using the provided cup, you don't have to guess at how much you're drinking, because the instructions tell you how many of their cups of water to drink.

The whole thing took about an hour, although I don't recall there being a specific time limit to this one. It took a little longer for it to work its "magic," but soon enough, I was a fixture in the loo, as expected. I still experienced the stomach bloating and feverishness, but I knew to expect that.

The next morning, I had to take the second dose. For some reason, my body decided "nope, we're done here," and I puked up the bottle of liquid almost immediately. I was still able to drink the necessary cups of water, and I was pretty darn sure there was nothing left in my bowels to be cleaned out after the night before. I was right, the colonoscopy happened without any problems.


Step 4: I suppose I already touched on step 4, which is the whole bathroom experience. But for the sake of laughter, let's recap:
 - Never trust a fart, giggle, cough, sneeze, or any sudden movements, unless you are already on the toilet.
 - Have your cell phone, tablet, laptop, or Kindle fully charged up and with you in the bathroom. You can only read that shampoo bottle so many times before you start repeating it in your sleep.
 - Your ass WILL hurt, when all is said and done. Pure liquid will be escaping you at a rate you never thought possible for the next 4-8 hours following colon prep. Have some baby wipes or disposable wipes available to help stay clean and comfortable.
 - Wear comfortable clothes. And don't wear expensive ones... it goes without saying you might "mess" in your britches.
 - Try to convince yourself that this will be worth the humiliation, pain, and disgust. And go ahead and plan out a midday meal following your procedure! You'll be loopy and fuzz-brained, but it will be the best meal you've ever had!

I have not covered all of the available colon preparation types in this post, I have only talked about the ones I've personally used before. In fact, the preparation for my surgery is not any one of the three I discussed - it's a simple mixture of over-the-counter laxatives and Miralax solution with some Gatorade. Hopefully this will be more pleasant than the last time!

What was your prep experience like? Did you have a different type of prep solution? Have you ever been turned away from your 'scope appointment because you weren't cleaned out enough? Let me know in the comments or privately by using the contact box to the right.

LIFE, POSTPONED and An RN's Point of View on Abdominal Surgery

Thanks to this sudden outbreak of shingles, the surgeon has postponed my surgery until I am cleared by my regular physician. It's too risky to perform surgery on someone with a viral outbreak, or any kind of infection for that matter.

In the meantime, I will continue to update my blog! I am keeping all of the details of my medical "adventures" as transparent as possible, because that's what will benefit others the most.

I would like to share a message I received from a very good friend of mine, who is a nurse. She has spelled out, step-by-step, what to expect from abdominal surgery, or any major surgery. This message has given me the most clarification, understanding, and reassurance, and I hope it will do the same for you.

• "I'm sure you heard a lot of 'it really depends on what we find when we get in there', and that seems to be true. My textbooks are aimed at the pre and post op ends rather than the surgical end as nurses don't need to know all of that, but it offers a bit more of what you are looking for. I figure I will give you best and worst case scenarios, and how to deal with worst case (I am going to leave out the obvious worst cases of death and whatnot and just mention the ones that do not get covered with every surgery)
  Starting with general abdominal surgery, best case (and most common), you will wake up with fuzzy memory and no pain, the pain will slowly return as meds wear off. You want to let your nurse know the pain is returning BEFORE it gets out of control as it is much easier to control pain at a steady rate than to try and play catch-up after it has reached a certain limit. Worst case, you wake up in post op recovery and have a significant amount of pain (this generally only happens if you wake up before they expected and is fairly rare), in this case I will not need to tell you what to do, you will do it, but just in case you are the very rare quiet type with this level of pain, don't be. The more vocal you are about being awake and in pain the faster someone will realize the issue and fix it. In the best case you should have something called an 'incentive spirometer' next to your bed, you breathe IN through this (everyone wants to blow on it) to encourage yourself to take deep breaths you can mark off how well you did on it as a level to beat next time. This has been shown to be surprisingly effective in preventing post op pneumonia and pulmonary embolism, which are higher risk in abdominal surgeries due to the 'discomfort' involved in taking deep breaths and coughing. You will likely be encouraged to cough, this clears out all the junk that settles in your lungs due to anesthesia, this WILL hurt. The best advice I have is to ask for an extra pillow or bring a small square pillow from home to kind of hug while you cough, it helps brace the abdominal muscles so it feels less terrible, again, stay on top of pain so this wont be so bad. You will obviously have weight restrictions but they will likely want you up and walking far sooner than you are interested in doing so, this helps your guts wake up, but it also helps prevent every blood clot related complication you can think of. Try to do it if you can, if not, let them put the SCD (leg squeezing air things) on you, you will hardly notice them after an hour or so.
  Specific to your surgery. You may be kept on TPN (IV fluid that has all the nutrition you could need) for a couple days to rest your bowels, you may have an NG (naso-gastral) tube to suck out any gas or mucous so the bowels can rest, you may have an NG that is feeding you and fuck resting your bowels, and you may be on a liquid diet. This all depends on how mobile your guts are, how much poking at them needed to be done, and how inflamed they were. The worst case here is actually slightly more common with bowel to bladder fistula because there is more inflammation involved, this is a temporary stoma (two actually) both sides of your guts may be ending on the outside just until they calm the hell down, then they go back in and put them back together (a quick and dirty procedure) These can be sore, but more often they are disturbing to people for a body image reason. You may or may not have drains coming out of your belly, these types of drains are generally more annoying to people than painful (so says my patients) and are usually removed within a couple days which is quick and described as a weird feeling, sometimes a burning feeling, but rarely painful, it happens so fast it would be similar to having an ear pierced where you notice the quick tinge of pain but it is already done (I've removed them, patients often don't even know I did it). Due to the bladder involvement, and the possible nutritional options, you may have a catheter for a couple days, good news, you don't have to get up to pee in the middle of the night . Worst case it may be on irrigation, this is a fairly rare situation with this surgery, but if you develop bleeding from the wall of your bladder they often put irrigation on to allow you to pass clots, it's cold, and it can make your bladder spasm so you think you have to pee all the time. If you have an NG tube either for decompression or feeding you want to keep the area of your nose where the tube touches clean and dry, seriously, not even a little bit kidding. This tissue can breakdown in hours, and you don't want a lopsided nose, let them monkey with it even if it feels clean to you. You will likely be asleep when it is placed, but if not, make an attempt not to punch the nurse, the eye-watering part is quick if you can force yourself through it. Removing the tube is less bothersome, but keep in mind a tube gets dragged across your gag reflex and puking and heaving are not uncommon. As gross as that sounds every single person I have had with a tube has said 'the puking and gagging on removal was well worth it to have the thing out and get to have a drink of anything, everything, just give me a thing to drink'. As far as the pain goes, it can be significant BUT the doctors know this and they want you to be active and getting better, they will do what they need to to provide pain control (get use to being asked to rate your pain on a 1-10 scale every time you open your eyes), be honest about your level of pain, and ask for relief before it gets to be too much. Abdominal surgeries effecting the bowel are tough because the bowels are slowed by the medications for pain, but remember that the complications from not participating in activity are WAY worse. 90% of your nurses will understand that this is a particularly tough incision to deal with since every movement involves these muscles and they will offer you plenty of pain meds, there is always one nurse who thinks everyone is 1: an addict, 2: going to become an addict, or 3: going to overdose on the same dose they have has for days... ignore her bitchy attitude (everyone else on the floor does) advocate for yourself. Last but not least, be prepared (and let [family] know to be prepared) for an emotional reaction no one warned you about (umm, well almost no one). You are well aware you will have a scar, but open abdominal surgeries leave an incision in a spot nearly impossible to NOT see during bandage changes and they can look really bad at first. Knowing this, knowing it will get better, knowing you are loved, none of that may matter. It is a kick in the teeth to see on your own body and can really have an impact at first, add to that you will likely be barred from eating that emotional wave away and there are people all around all the damn time, your sleep is interrupted, you're uncomfortable... just be ready for some teenager in PMS level emotions."

I have slightly edited a few items of the above message for clarity, but as you can see, she was extremely clear on what to expect. I am so grateful for this outline from the point of view of someone who directly cares for surgery patients. Let me know if you find this helpful!

What's It Like?

One area of research I have had a hard time finding information on is the surgical experience. 75% of people diagnosed with Crohn's Disease will require surgery at some point (source: CCFA). However, when I would search for articles, blogs, or any kind of "user reviews" on Crohn's surgeries, I mostly just found medical journals - no actual user experiences. That's another reason I'm creating this blog.

My healthcare team and I recently decided that surgery is the best option for me right now. I have two fistulas: one enterocolic fistula (connecting my small intestine to my bowel), and the other an enterovesical fistula (connecting my bowel to my bladder). The surgery, called fistulectomy, will be done under general anesthesia, and will be open-abdominal, rather than laporoscopic. This means the healing time will be quite long, and I will spend a minimum of 7 days in the hospital.

That's all I really know at this point, as far as what to expect. But I want to know more - specifically, what will I feel the moment I wake up from surgery? How much pain should I expect and for how long? What kind of tips/tricks will help me heal quickly and safely? What will life at home be like for the first few weeks? These, and many other questions that I have cannot be answered with anything other than "general" answers by my healthcare team. So, I turned to the trusty Internet, where I have always found answers.

I came up empty-handed.

I finally posted my questions to Crohn's support groups on Facebook, and received a few very general answers. "Surgery was the best thing I ever did!" "It was painful, but it was worth it." These weren't the answers I was seeking. I wanted to know about the whole experience. What's it like to go in to surgery? What's it like to wake up after the surgery? What's it like at home?

That's the ultimate reason for this blog - to give future Crohn's patients a place to find out what it's like. From surgery, to medications, to flare stories, to foods we can/can't eat, I want to share it all. And I'd eventually like to have more than just my personal experience; I'd like to have other Crohnies contribute their experiences.

Every Crohn's Disease patient has a story, and every story is a little different. This is my story.