Hey welcome to Fairmont General Hospital. I has been admitted again! Having take you to your knees pain in my lower abdomin, my care team thinks I have either a small perforation and or a abcess. Over night my care team pumped me full of fluids, antibiotics, and other meds to keep my from infection. As many of you know both of these things are pretty rough and you can end up with nasty infection or septic. Just got my first double dose of pain meds for the day. I’m currently enjoying a breakfast of ice chips. I’ll do my best to keep all updated.
All Respect to My Docs
Well yesterday, March 19 2014, I had my colonoscopy / endoscopy follow-up with Doc C. As my Chronic Babies should all know and hopefully this will educate some others, these Doctors are real people to, with real emotions, emotions sometimes they wear on their sleeves. I am very good friends with my two GPs, Doc David, and PA Carla as well as my GI, Doc C. They spend lots of time at appointments and go out of their way to say hello if they see me about.
As I sat waiting in the waiting room (I do lots of this, i.e. foot pics) of Fairmont General Hospital Department of Gastroenterology, I noticed Doc C walking down the hall toward his office with a different look on his face. Just a few moments after that his wife, Nurse Michele call me and we started the routine, weight, BP, Meds , etc. Now like I said I know these folks so I said Doc looked very tired to which she replied no, he is upset. Me being me I said “Why?” to which Michele said he had just done a procedure and it wasn’t good. I left well enough alone at that point since he is one of the best GI’s in my area it must have been bad.
A Doctor’s Letter to Patients with a Chronic Illness
Karen Lee RichardsHealth Guide June 30, 2013
· As chronic pain patients, we often get frustrated and even angry with doctors. We just want a doctor who will understand how much pain we’re in and will try to help us get some relief. But sometimes doctors seem like they’d rather not be bothered with us. Have you ever wondered what your doctor is thinking and feeling about you?
I just came across a very powerful and compassionate letter that gives us a rare and valuable insight into how our doctors might be feeling. It was written to patients with chronic illnesses by Rob Lamberts, MD, in his blog “Musings of a Distractible Mind(Thoughts of an odd, but not harmful primary care physician).” It was originally posted on July 14, 2012
A Letter to Patients With Chronic Disease
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, IBD, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously. So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
Keep your eggs in only a few baskets –
find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
3. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
4. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
5. Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
· You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
In Your Darkest Moment Always Remember There is Still Hope!!! 🙂
5. Ileocecal Valve (which regulates the amount of material passed from the small bowel to the large bowel and prevents “dumping” all at once
6. Large Bowel (also called the Large Intestine or the Colon). The colon is much wider in diameter than the small bowel and is approximately 1.5 metres long. Once again, there are sections of the colon which are identified by different names to enable discussion about clinical issues :
Cecum and appendix
Hepatic flexure (a bend in the gut at close to the location of the liver)
Splenic flexure (another bend located near the spleen)
The main functions of the colon are to extract water and salt from stool, and store it until it can be expelled via the anus. When stool first enters the colon from the small bowel, it is very watery. As it traverses the large bowel, water is reabsorbed and the stool gradually becomes firmer.
The Scoop on Poop
Let’s talk a bit about stool, also known as feces. It may seem glib and a bit crass to kid around about toilet humor and “the scoop on poop” however, the fact of the matter is that bowel function is a normal, absolutely necessary function of the human body.
When it is not normal – as with IBD – all kinds of trouble can result. We, like many who deal with IBD, address the issues of bowel function and feces in a direct manner, and occasionally with humour, we do so with the best of intent and the desire to help you face this disease openly and frankly. Our aim is to take IBD out of the shadows where it will remain unless more people talk about it directly.
Stool or feces, is the by-product of digestion through the GI tract. In a healthy individual, it is usually composed of water, dead and living bacteria, fiber (undigested food), intestinal mucous and sloughed-off lining of the gut. It is not normal to have blood in feces, nor large amounts of mucous. Feces from an individual without any gut disease is soft enough to pass comfortably from the rectum and anus, and (depending on the person) is typically expelled one or two times a day.
Bowel movements are an entirely different matter for someone with IBD. If you have IBD, there are some very real challenges related to feelings of urgency, diarrhea and bloody stool.
(Source-Crohns & ulcerative colitis foundation of canada)
something i have not experienced since diagnoses 2008, Remission!
i capitalize Remission for a number of reasons, but the main reason being i see it as a state, a royal majestic state. if you read much of my writing, im sure youre annoyed by my constant writing habit of writing in all under case, with very few exceptions.
as much as i hate to admit it, there is no way around “if”. “if i knew what being in Remission meant.. “if i had enough energy to finish my day as strong as i started it”.. i think every single day, i find myself finishing my “if” quandaries differently. “if” is one word i one delete from the language of chronic illness. its so limiting, so…
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This is an awesome piece, says so much…