There's An App For That*

There is never going to be a great time to have UC or CD. However, sufferers today have a lot going for us: strides are being made all the time to further understand the biological, environmental, microbial, genetic, and nutritional factors at work. In addition to the thousands of specialists and volunteers who are working tirelessly on our behalf, we also have a modern phenomenon in our corner: the App. Short for "application", apps are a seemingly ubiquitous part of our lives. There are tens of thousands already in existence: designed to enhance our mobile lives by providing easier access to our favourite websites and games. For the purposes of this blog**, I will focus on several of the medical apps that I have been testing out over the last few months. 

"Can't Wait" 

Concept: As I have mentioned in previous posts, the "Can't Wait" app was produced through the Crohn's and Colitis Foundation of Canada. Like many other applications, it works in connection with your phone's GPS and pinpoints where the user is located. Once this has been established, all public bathrooms near your location are identified using the "Gutsy" mascot encircled in either green or red. Green circles indicate that the bathroom is currently open and available (based on the hours of operation of the building it's situated in, etc); red circles indicate the the bathroom in question is currently closed or otherwise unavailable.  

Reality: The app is actually pretty fantastic. It has been correct every time I have used it and it has allowed me to more confidently venture out into the world. It also has the added functionality to add user-specific locations to the program if they are not already identified on the GPS screens. One drawback is that the further away from major population centres you venture, the less the bathrooms are listed. If you are in Toronto, Ottawa or London it is not a problem; but less dense populations seem to also signal less-developed bathroom icons.

Vote: Worth it. 

GI Monitor

Concept: This app is designed to help Colitis and Crohn's patients shift their monitoring into the modern age. It allows for users to track everything from bowel movements and daily symptoms, to food diaries and current medications. In the description to the app, the creator argues that this will help usher in a new age of communication with your healthcare team. With simple clicks of a button, you can send your doctor or healthcare support worker a synthesis of your symptoms on a daily or weekly basis. Additionally, the app allows for monthly trending, allowing for the user to more accurately identify whether their disease is really in remission or actually headed toward a full blown flare-up, etc. 

Reality: I enjoy the functionality of the app. It allows me to simultaneously identify and articulate symptoms and put them into context by tying them to my Colitis. I do think that the designers may have been a little ambitious in their pitch regarding the communication opportunities provided: your doctor would have to be part of the same Wellness Group that designs the app in order to receive the updates of your medical data. Also, some of the functionality is frustrating to use. For example, under the medication section you can only enter each medication once. This completely ignores the reality that many UC/CD patients are put on drugs of various strengths, in various forms, at different stages of their disease throughout their lifetime. In the app, you can only select the dosage, timing and form of medication (infusion, PO, injection, IV, liquid, sublingually, etc) once.

Vote: Definitely has room for improvement, but overall I find it is a step in the right direction. Also, there is something about clicking on bowel movement icons that somehow makes it simultaneously more and less gruesome. Winning!*** 

CD Diary

Concept: I find this app to be both straightforward and useful. It allows for IBD patients (it is not necessarily restricted to Crohn's sufferers) to complete a daily on-line journal on the current state of their health. You can record notes on diet and portion sizes, highlight foods that produced significant reactions (either adverse or beneficial), record the meds taken and whether or not they have had any effect. 

Reality: It is not far off from the concept. Essentially, it provides an electronic platform, with pre-established topics and data fields, to record details that can be instrumental in communicating with your healthcare team. Some people may find the 'ol pen and paper just as effective and not inhibited by the dual plagues of sausage fingers and auto-correct,**** but I personally like being able to jot down thoughts related to pre-determined topics.   

Vote: Worth it, especially if you're a techy. 

Where to Wee

Concept: Identifies the location of bathrooms related to your location on GPS. 

Hopefully these can be avoided. 

Reality: Performs as advertised. Unlike the CCFC app, however, it does not indicate whether or not the bathrooms in question are open or closed. Much easier to navigate in familiar geographic areas where you will have a better sense of the buildings the bathrooms are located in and whether or not they are likely to be available. 

Vote: It's free, so I personally don't think it costs anything (except internal device memory) to have it as a back-up. All told, I do prefer the CCFC-sponsored app. 

___________________

* I am biased: I-phone. I-phone. I-phone! Down with the Blackberry! 

** Otherwise I would tell you all about "Plants vs. Zombies" and why you must have it. 
*** See Charlie Sheen section of the FML page.     

**** Sausage Fingers can be understood as the phenomenon of fingers being larger than the minuscule keys that said fingers are attempting to utilize to make words. Iphone keys are notoriously difficult to navigate because they are not raised or individualized. Rather, they operate on a touch screen that makes it very easy to mis-type. Auto-correct turns words that the operating system is unfamiliar with (for example: bitchitis) and turns it into a word it understands (for example: birch tree). This then changes the meaning of your entire message as well as nonsensically making the operator look like a spaz. 

Joy and Misery*

Yeah, I have been avoiding the blog. You're not imagining it. I found it was much easier to have the proper perspective (complete with witticisms and sarcastic comments), when procedures and hospitals were relatively few and far between. The last three months, however, have been rife with return trips to the hospital, infections, weird health complications and quite a bit of bitchitis on my part. As such, I didn't want to write and spread my relative misery around. Then the people who actually read this blog will stop being impressed with how together I am, and how much I take my colitis in stride (because I don't, really.) 

But, here's what I've been up to of late: the last week that I was in the hospital was probably one of the most miserable and uncomfortable of my life. The oxycontin pills that I had been prescribed for pain management were no longer effective (read: they are designed to be slowly released over approximately 12 hours and to provide continuous pain relief, but they were passing through my body whole, with little or no absorption). So, the doctors played around with other forms of pain relief, but to be honest nothing seemed to even take the edge off. The pain was completely foreign and seemed to be two-fold: internal and external. The external was kind of anticipated – sort of like when you have a cold and your nose gets all sore from constant sneezing and tissue-use. Only the cold was the stomach flu…and my nose was somewhere else. You get the idea.The internal stuff was terruhhhble. I was told it was normal and that it would calm down when my body re-learned how to work and adjusted to solid foods again. Those next four weeks literally dragged: I was up at all hours in the washroom, attempting (but not at all succeeding) to deal with unbelievable and unrelenting pain. Jpouchers, I have learned, refer to this pain as “butt burn”, which I feel is the equivalent to calling violent, man-devouring tigers, “house cats”. I choose, instead, to refer to this delightful feeling as the “fiery pits of ass-hell.”   

For those of you unlucky souls out there suffering from this same condition, I did mega-amounts of research trying to find ways to alleviate both the internal and external symptoms. For the record, I had very limited success.** The only thing that actually seemed to help was taking warm baths (which I could now do because I no longer had to worry about ostomy seals coming loose. Hey-o! :). I can recommend taking sitz and Epsom salt baths (which originally helped with external soreness), but be warned: once things start to calm down on the external side (in direct correlation to the slowing down of the bowel and bowel movements), I found that sitz baths actually made my skin feel so dry it felt like I was slowly being pickled.

All of this was complicated by the timing of my release from the hospital. I was able to see my GP (the loveliest of all lovely ladies), prior to her leaving for Christmas break. She helped where she could, but was unsure of her footing (she seems to have a fear of interfering with the treatment protocols prescribed by my attending physicians). She also left the number of a health group that I could get in touch with if I needed anything over the holidays. Dr. MacRae was also off, but I was given a phone number for the surgeon-on-call at Sinai if I had any questions or concerns. I appreciated the sentiment, and called all of the numbers in the hope of trying to speak to someone about my current symptoms and my persistent level of pain. None of the doctors or nurses I spoke to seemed willing (or necessarily able) to help me. It seems pretty prevalent for doctors (and especially less-empowered nurses), to fear interfering or derailing pre-established treatment plans. Telehealth Ontario, the medical group referred by my GP and the surgeon-on-call pretty much had identical sentiments once I had gotten a hold of them: “sorry, we can’t really help you, you should go to the ER.”

Suffice it to say, I ignored all of the doctor’s advice to get me back to the hospital. I refused to be back at Sinai over the holidays – things were depressing enough without being surrounded by ubiquitous Christmas Carols and hospital food instead of holiday treats and deliciousness (not that I ate any of that this year, but it really comes down to the principle of the thing). All of this was complicated by the fact that I ran out of pain pills. They weren’t really doing much to help with the pain that I associated with the surgery, but I had been on them without interruption for almost three years. So, the resulting detox was staggeringly difficult to get through. I remember reading “A Million Little Pieces” by James Frey a while ago and thinking that I could never have survived rehab. Regardless of what was fiction and what was literal truth in the book, the symptoms of withdrawal from alcohol and drugs as detailed were inescapable and all encompassing:  physical pain, vomiting, fevers and chills, headaches, twitches/convulsions, restlessness, depression, emotional distress, etc. etc. What I experienced was a microcosm of that: nausea, chills, fever and restlessness. I couldn’t sleep because I couldn’t lie still. I remember pacing the halls of my house for hours at night willing myself into exhaustion so that I could sleep for a while. I felt it in my arms the worst – it felt like I would literally drive myself crazy if I didn’t keep them moving. In desperation, I would lie with my arms pinned behind my back to try and get them to go numb.  

But, like everything else, the worst of that passed. After about four days, I started being able to sleep again with some regularity (more than two hours at a time) and am now narcotic free. (Go-Go Clean Living!) However, the pain really never seemed to abate so I went back to see my surgeon in early January. It turns out that the pain was not simply “fiery pits of ass-hell”, but rather a stricture that had formed at the junction point where the Jpouch attaches to the rectum. Scar tissue had formed and was impeding the ability of the pouch to fully empty. As a result, there was a bacterial imbalance in the pouch which was causing it to become enflamed. So, I underwent what is delightfully known as “dilation”; a process by which Dr. MacRae manually breaks up the scar tissue. And please, just take a quick moment to think about what she would have had to do in order to break up said scar tissue, the tools she employed, and the place that would need to be “accessed” for this procedure. Then know that this is one of those procedures where you are warned beforehand that “it’s going to be painful” (note that they don’t even bother to use the euphemisms of ‘uncomfortable’ or ‘pressure’ or ‘pinch’). And, boy, did they undersell it! YOW! (and another OW for good measure). Following the dilation (and the ensuing tears and screams…I wish I was embellishing), I felt better than I had since the surgery. I felt like getting up and moving around and the pain disappeared except for the occasional twinge. No more bag and no more pain; I felt golden!

But, the pain returned about 10 days later, so I had to go back in to see MacRae. She dilated the stricture again (which was as delightful as I remembered it) and gave me a course of combination Flagyl and Cipro for ten days. This seemed to do the trick and I felt fantastic (with almost Enormo Face-steroid energy levels) for about two weeks. But, this past week I found myself back at MacRae’s for another consult. She doesn’t think it’s still the stricture, so she’s diagnosed me with inflammation of the pouch (aka pouchitis) and put me on Flagyl for a month to try and knock it back. So far, I feel pretty good – I am comfortable leaving and eating outside of the house and rarely feel panic if I am unfamiliar with the area I am in and unsure about the bathroom situations.

We’ll have to see how the pain is managed with the antibiotics and take it from there. I heard rumblings about a possible “shock and awe” campaign starring the dreaded prednisone if the Flagyl is unsuccessful. But, for now… I am loving the non-ostomy lifestyle. Emerging on the other side of these complications and starting to examine them in retrospect, I would still make the same decision about the reversal. So, when I am having a bad hour/night/day/week… I try to be grateful. And if that doesn’t work, I read my new self help book: “The Little Book of Bunny Suicides.” It could, in fact, always be worse: I could be a suicidal bunny rabbit who is unwilling to compromise on my quest to end my life in the most heinous and grotesque ways possible. Or I could be Charlie Sheen.

* Dear Florence Welch: Thank you for covering “Hospital Beds.” You saved my life, again.

** See “Brought To You By the Letter J” page from the home screen for a list of these medications and how they compare to one another.