The Camera Goes WHERE?

Colonoscopy, Sigmoidoscopy, Endoscopy... they're all different versions of sticking a long tube with a camera into places cameras shouldn't go. But, for Crohn's and Colitis patients, they're medically necessary.

As I discussed in this post, the preparation for these procedures is the worst part of the entire process. From the moment you arrive to your appointment, you can finally relax a bit and just let it all happen. Chances are, you didn't sleep much the night before, and the thought of being forced to nap with anesthesia is probably a welcome one.

When I arrive to my appointment, I am given a super-stylish hospital gown and robe, as well as a pair of non-slip socks to wear. Once I have changed into these designer duds, I'm led to an area of the clinic or hospital with comfy seats and curtains.

Here, the attending nurse or medical assistant starts an I.V. with a saline drip. That poke of the needle is the only pain you'll experience the whole day. From here on out, it's a breeze.

After the I.V. is placed and I've been pumped full of a bit of saline, the nurse leads me to a room with an exam table. They have me lie on my left side, and usually give me warm blankets to cozy up with.

At this point, the nurse puts anesthetic medicine into the I.V. line, and within seconds, I'm completely out. Even though the anesthesia used for these scopes is a light "twilight" kind, it still knocks me out to a point where I don't feel or remember anything about the procedure.

The next thing I know, I'm being woken up by a different nurse, and I'm surrounded by the sounds of people farting. Yes, that's right, farting. Intentionally.

When you have a colonoscopy, you are typically pumped full of air in order to get a better look at your intestines. Before you can leave the clinic or hospital, you must pass this gas. Needless to say, this happens in the recovery room, which is usually an open area with curtains separating the patients. You get to hear it all!

Farting is always funny. And anesthesia makes everything seem about 10X funnier. If you don't have a sense of humor, get one. You're going to need it.

After I'm able to pass gas (giggling not required, but highly recommended), the nurse usually allows me to have something to drink of my choice. I opt for soda most of the time, and it's always served in a short little can with a plastic cup. I don't know why, but this is funny to me. Like I said, everything is funny when you're still coming out of anesthesia.

Once I have proven to the nurse that I can keep liquids down, he or she takes my I.V. out of my arm, and I am free to go. They ask you to change back in to your own clothing, because I'm sure everyone is pining to steal their fabulous gowns. I am then released to the care of which ever adult came with me to my appointment. This adult is usually my mom, because moms are the best!

When we've left the hospital or clinic, I whine and beg my mom to take me out to eat. Granted, I'm in no physical shape or appearance to be going out in public, but damnit, I'm hungry! And everything sounds delicious! She usually obliges, and we do just that.

The rest of my day I usually spend in bed or on the couch, dozing in and out of sleep. The effects of the anesthesia can last up to 24 hours, so I typically just stay at my mom's house during this time. I have never experienced any pain in my guts following a scope, but I have experienced some blood in the toilet from where they took biopsy samples. Luckily, this is fairly normal, and since there are very few nerve-endings in the bowels, this doesn't hurt.

By the next morning, I'm feeling fine as frog hair (what does that even mean?!), and I'm able to return to normal activities. Sometimes the doctor calls with my scope results the next day, but it's usually a few days later.

Get Well Never

Any Crohn's patient can tell you, there are good days and there are bad days. We all strive to have more good days, but those bad days always sneak their way in.

Today, I'm having a good day! The shingles outbreak seems to be less painful and guts are *gasp* behaving. That, or I'm just getting accustomed to pain.

My pain tolerance has grown over the years, thanks to Crohn's Disease. While most people would find this to be a positive trait, I'm scared of it. I find myself putting up with pains that would place most people into the fetal position on the nearest bathroom floor. Ignoring these pains and aches could be detrimental to my health.

That's most likely how I ended up with two fistulas in my intestines. These things are extremely painful, and the beginning ulcers would have been extremely painful. But I wrote off the pain as if it were just Crohn's being Crohn's, contracting my guts and making me uncomfortable. Early intervention may have prevented those ulcers from becoming fistulas.

Feeling too much pain, vomiting too much, or having an overabundance of ANY symptoms should never be taken lightly. But when you go for weeks, months, or even years with persistent pain, it becomes second nature. I'm sure there have been many times when I should have gone to the hospital to address my symptoms, but I chalked it up to "just another flare."

So, please, fellow Crohnies and UC Buddies, consider every symptom you experience, and really think it through before ignoring it or writing it off as "nothing." Symptoms are the warning signs of problems, and we need to take care of them before they take over our bodies!

Be seen by a health professional as soon as humanly possible if you experience:

• Unusual or new pain
• Fever - even low-grade fever can indicate infection
• Sudden weight loss (more than 10 lbs in one week)
• Bloody vomit or stools

These symptoms are not uncommon for Crohnies, but they can indicate something serious brewing in your body.

Obligatory disclaimer: The contents of this blog are of my own education, experience, and opinions. In no way should any information in my blog be used in lieu of proper medical or nutritional care. Use common sense.

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.