Tragic's Wake

I have Crohn’s Disease.

Many cases of Crohn’s Disease are pretty easy to deal with. There are diet changes, maintenance drugs and periodic testing. They monitor it fairly closely and the average Crohn’s patient can go along happily having a few short flare-ups per year. A flare-up consists of some cramping, diarrhoea, maybe some vomiting, some inflammation, reflux disorders, loss of appetite, blood in the stool, perhaps a blockage or an abscess…

Then you have the hard luck cases.

You have the people who suffer continuous infections, severe chronic diarrhoea, massive cramps and body pain, abscesses, fistulas, vomiting, body aches and pains, peripheral arthritis, weight losses, loss of appetite, malabsorption, exhaustion, chronic anaemia, bowel and intestinal strictures, blockages, reduced kidney and liver function, pancreatitis, blood sugar issues, and much much worse sometimes.

I am such a case.

I have had absolutely no remission since March 1996. I suffer all of the symptoms I have just listed for “hard luck cases” (with the exception of pancreatitis, thank god) and I am classed as a “non responder” which means that no traditional meds have any effect. No pills or known therapies help my case. The inflammation continually worsens and the symptoms follow suit.

Fistulas are the most painful, to me anyhow. They are caused when an abscess inside breaks and then it eats through to another piece of intestine or an organ – uterus, bladder, kidney, liver and others, sometimes they even break through to the surface, through the skin, into the outside air. The most common fistulas are through the vagina and around the anus. Thy can be very tiny or they can be quite large, they all hurt and they’re all at a high risk of serious infection.

I have several fistulas currently.

There are a bunch near the anus, mostly pin-prick size, they feel like infected hemorrhoids at best, they sometimes bleed and swell and burn and itch. That’s a real bitch. I have a few beside my urethra, they really burn sometimes, they swell and make urination feel like the 9th ring of hell.

The worst one is pretty big, it goes from my bowel to my bladder. It cramps up and gas passes through. Its horrible. I can feel the gas rush in and my bladder swells, it feels like white hot knives with serrated blades just jagging through. Think a severe bladder infection, the pains you get when you need to pee and multiply that by about 10.

Then when my bowels need to move – the fecal matter (always watery and acidic) rushes through the hole. It can (and has) dropped me to my knees on the floor howling. Its ten times worse still then the gas going into my bladder.

I will go to urinate and there will be a blast of fluids (like a shower head because of the fistulas around my urethra) followed by bits and chunks of feces and finally a blast of gas — all exiting through my urethra which is usually raw and burnt inside from the acidic waste matter. I get serious infections very often, they suck, a lot.

There are many levels of Crohn’s Disease.

I haven’t been recommended for surgery as yet but they’ve told me that the main reason that is not an option is the fact that my body is far too weakened to survive the ordeal.

I started to manifest symptoms as far back as 1991 when I was fifteen. The doctors back then blamed it on teenage hormones and accused me of intentional anorexia. I lost my appetite, had massive cramps in my belly, lost a lot of weight and I got diarrhoea quite often. I begged them to run tests or something, anything, but they refused and told me that I’d outgrow it soon enough. It went on for almost a year and then it abruptly stopped. I thought that perhaps they’d been right. In any case, I thought that whatever it was had finally passed and I could live like a normal human being again…

Nope…

In 1996, within a week of my third daughter’s birth – it all started again. Cramps, loss of appetite, weakness, exhaustion, nausea, weight loss, headaches, body aches, constant diarrhoea. I felt like crap from the minute I woke up until whatever time I finally collapsed into my bed at night.

Again, I went to the doctors for help.

My family doctor at the time first dismissed it as some kind of postpartum strain. Then she said it was my birth control pills so she switched them. It had no effect so she decided that I was depressed and she gave me anti-depressant medication. It had no effect either so she started switching my birth control pills and my anti-depressants every few weeks, she was certain that it was nothing more than hormonal imbalance, or in plain English – woman problems.

It went on for a few years and still she refused to request any tests or diagnostics. I eventually got fed up and switched to a new family doctor. I was hoping, nay praying, that he would somehow figure it out and make it stop.

Mostly useless endeavour …

This new doctor didn’t impress me much because he started going through the exact same bullshit that the first had done. More kinds of anti-depressants, more birth control pills, repeatedly, until I felt like I was going through some kind of menopause or something completely crazy in my chemical structures…

I begged him to stop with all those screwy meds and finally he did. Now he decided that I must have stomach ulcers so without any tests or diagnostics – he prescribed Tagamet, an ulcer medication (I would find out later that it likely made my Crohn’s worse and also that it was common procedure to have tests done before giving Tagamet because there are several issues that mimic the symptoms of ulcers and Tagamet can worsen the condition by threefold).

The doctor then decided that he’d try yet another form of birth control in the form of injections every three months – Depo Provera. It was a great birth control, I didn’t even have periods which was great for my chronic childhood anaemia, but it did nothing for the original symptoms and it also gave me insanely massive migraines.

After a few years the Depo started to go wrong in my system, my body started to reject it which caused a lot of really nasty symptoms on top of what I already suffered. Now I was crying and feeling suicidal, my hair was coming out in handfuls, I started bleeding and I bled heavier than a bad period, for 6 and 8 weeks at a time. The Depo made my preexisting symptoms worse by tenfold and I was seriously ready to just slit my throat and be done with it.

He said it was a simple imbalance so he gave me birth control pills to take along with the Depo shots and yet more antidepressants. I was a mess, in mind and body. I coped (barely) for three months and when it came time for my next shot of Depo I refused and I threw away all of the pills that he’d given me.

I had pretty much given up now. I refused to see another doctor for a couple of years and I coped on my own as best I could. I should have bought stock in the Imodium company. I took Tylenol with codeine like it was candy…

I had a pap test coming up and I figured I’d better go, at the age of 21 I had already had surgery for 2nd stage precancerous cells on my cervix. I wasn’t going to fuck around with that. I went for the test.

I got a call back a few weeks later and they had already scheduled another surgery – the cells were back and 3X worse than they’d been the first time. I went in, had the procedure and came home feeling like at least that was taken care of.

Within a few weeks I started having some really scary symptoms. I had a swollen spot where my right ovary is, it was visible on the outside, almost as big as a squash ball and it was hot and really hurt to touch. I was losing blood in my urine too and I got scared so I called in. They said they’d check it at my six week checkup after the surgery so I said OK.

I went in for the six week checkup and my gynaecologist was alarmed. He ordered an emergency ultrasound for the very next day. I went home, barely slept and sat writing in my diary about what I was feeling and being scared to die and being certain that all of this was somehow connected to my original symptoms but they’d ignored me and now – I was certain that I was going to die.

The ultrasound was average, nothing to write home about, but the tech started running in and out and whispering. They took me to another machine, a more modern more expensive one and they set it up and started over again. They saw something scary and then one immediately ran for a doctor who was in the hall. The doctor came in and he hemmed and hawed and whispered and wrote something down on my file. I asked him what was wrong, I had been asking the tech but they just looked away like I wasn’t even there, like I’d said nothing.

This doctor though, he had a whole new reaction for me! He looked at me. Again, shaking, with tears in my eyes and my voice breaking I asked him “Whats going on? Whats wrong with me?” he paused, glanced at the techs and then back at me – then he turned and literally ran out of the room.

I completely broke down then and I started begging the techs to tell me something, anything…
No deal, they both just kept putting things away and talking to each other as though I wasn’t even there. I was terrified. I thought I was going to die right there on the cold table.

After the older tech left, the woman tech looked at me and whispered “There is nothing wrong with your reproductive system I can promise you that, I can’t say anything else…” she handed me my clothes and like a flash – she was gone… on the way out a nurse yelled to me that my doctor would be in touch.

I stumbled out to a taxi, tears streaming down my cheeks and I told him my address and sunk into the seat. I don’t recall the drive home, I don’t recall much of anything for the next few days.

I got a call from my gynaecologist asking me to come in the next morning and so I did. He sat me down at his desk and he made sure I was comfortable and he began. He tells me that my reproductive organs are completely healthy, there is absolutely nothing wrong, the cancerous cells are gone. So I am completely terrified at this point. Its not that then what the hell is it?

He gravely tells me that they believe that I have IBD, inflammatory bowel disease — Crohn’s to be specific.

Amazingly, I started to laugh. I laughed like it was the best joke I’d ever heard. It wasn’t because I was in shock nor was it disbelief. Believe it or not – it was relief. Sheer unadulterated relief. I had imagined something so much worse, cancer, AIDs, I don’t know, something horrible that had no treatment and was going to kill me in a matter of days…

Of course the doctor thought I was insane until I explained what I had been fearing.
So then it was a trip back to my family doctor and a referral to a GI doc. A shitload of tests and lots of invasive prodding.

My family doctor looked at me and then looked away, it was months before he could look me in the eye again after my diagnosis – he felt guilt because he truly hadn’t believed me, he seriously thought that I was either making it up for attention or that it was really all in my head. When it came out that I was telling the truth and it was much worse than he could have possibly imagined – he felt like an asshole.

I’m also hoping that the thought crossed his mind concerning the Tagamet he gave me because it very likely made the whole situation worse. Also – it was his idea for the Depo Provera and when it began to fail – it was actually starting to disassemble my autoimmune system, Crohn’s is an autoimmune disease — the Depo may have been what set me so close to the state that I am in today.

So I went through months of testing, diagnostics, cameras in my ass — yes, it was definitely Crohn’s. So, what are we going to do to treat it? Not a bloody thing. We’re going to “observe” for a time and see what happens. I was eventually given something called Entocort – it did absolutely nothing. I was given steroids – prednisone – and a drug called Salofalk. The Prednisone had an effect, I had energy, less pain, a massive appetite. The Salofalk made me sick as bloody hell. I was then given Imuran an my Salofalk was doubled, I was sicker than I’d ever been and I totally wanted to just die.

At that point, the new GI (who had a truly shitty bedside manner) started being outright insulting. He saw my Pagan pentacle and he asked what it was supposed to be. I told him it was a religious/spiritual thing. I explained that I followed a different religious system than many and that I prayed to different Gods even though the sentiment was the same. I explained that wearing the pentacle was the same for me as for Christians who wear their little pretty crosses. His own cross pendant was visible so I figured that he’d understand. He curled his lip and sneered “Oh so you think that stuff is going to help huh?” then he made a “pffffth” sound and turned back to the paperwork. I let it slide, religion has no place in medicine, not in procedure and practice anyhow, its a private personal thing. I don’t care what he believes as long as he does his job, that ideal should be a two way street, sadly, for some, it is not.

So on another appointment he looks at my navel ring while I’m on his table. He flicks it with his thumb and uses that same snotty tone as before and he says “So, have you noticed that this thing makes your disease any better?” and I stared at him a few seconds and simply blinked. He says “Well?” and I snapped “No, sir.” and looked away, ‘just hurry up and get this shit done you asshole’ I thought. ‘My belly ring is none of your goddamn business and it certainly has nothing to do with Crohn’s‘ I wish I’d said it aloud.

That day he used a medium sized vaginal speculum to perform my rectal exam.
It would be the last time I saw him, period.

I was feeling much better after the months of Prednisone therapy and I started to believe that I could handle this mess on my own. I just stopped calling the doctor and I let my voice-mail get is calls. I was discouraged and I was sickened by the way that GI doctor had treated me.

During all of this – this entire account – my original symptoms never ever went away. I had periods where they were either worse, much worse or at least somewhat tolerable. I did not have solid bowel movements anymore and I never did recover much of an appetite without the Prednisone.

I went tolerably well on my own for almost a year and a half and then it hit me again, worse than ever before. I was in the late stages of malnutrition before I went back to the doctors and begged for help. I was down to 96lbs (my regular weight was usually between 119-128lbs), my hair was coming out so much that I had visible thin spots, my teeth were all loose enough that I could move them back and forth. The pain was horrendous. I had no energy at all, I couldn’t even get out of bed.

This was now my third episode of malnutrition.

I had a dream, a crazy creepy dream. There were these three beautiful ladies and they were smiling at me. They told me that I could go home if that was what I really wanted. They told me that nobody would hold it against me and that they’d take me home, safe, away from the pain, away from the sickness.

I remember that I considered the choice, I almost went too. I started to step toward the woman who had spoken to me and she raised her hand to take mine. I almost took her hand, so close, but then something stopped me.

I realized exactly what home meant. By this point I also knew that I was dreaming and still the dream hadn’t gone away, I hadn’t woken up. I thought about my kids, my whole world, all in barely a heartbeat it flashed before my eyes.

I felt overwhelmingly that it wasn’t really my time, this was actually a wake up call. I looked to her again and I felt my response to her, it was as loud as if I’d spoken. I told her that I wasn’t ready, not yet.

I still had things to do, people who needed me. She looked to the other two ladies and they smiled and nodded. She looked back to me and said “So be it then. We will come back, anytime that you feel you are ready, when you know that you need us – we will come for you and we will take you home, you just need to call for us, you know how.” she leaned close and she kissed my forehead.

The second that her lips touched me everything turned black, blacker than anything I have ever seen in my life. I felt the sensation of falling really fast. I felt that I hit my bed and it was hard enough that I bounced up like a convulsion and then sat upright in my bed, wide awake and shivering.

When I went back to sleep that night I’d had a fever and now I’d broken a cold sweat, my sheets were soaked, my hair plastered to my face. I had felt her lips as real as the kisses that I always got from my daughter at bed time. I knew it was not a dream, I knew that it was time to call the doctor again

I gently drifted back to sleep knowing what I needed to do…

I woke the next morning actually feeling rested for the first time in months if not years. I got out of bed and I made breakfast and I waited for the doctor’s office to open. I got my daughter ready and off to school, I brewed a pot of coffee, took a long hot shower and then I reached for the phone.

I made the appointment to see my family doctor and he set me up with another GI. He didn’t question my experiences with the other GI, in fact – he didn’t even seem surprised. He warned me that this new GI wasn’t exactly friendly either but he said it wouldn’t be like it was with the first guy. I didn’t have a whole lot of choice, there were only three GI docs in my city and only two were accepting patients. He assured me though, that this guy, would get the job done.

Little did he know…

I got in to see this new doctor. He was a prick, fully completely. His attitude was like he was God or even higher. He refused to answer any questions and he said he “wasn’t there for hand holding” he said if I wanted to know “then buy a damn book“. He wouldn’t discuss any test results and he refused to even allow me to see my file. He refused to even tell me where my Crohn’s was focused or how bad it really was. He told me that I was there to listen and he was there to talk and prescribe.

He knew that I was in serious agonizing pain and he said at first that there was no pain management for Crohn’s Disease, he said that nothing was safe for the condition or the other medications that I would have to take. He said that it was better that way anyway because if I couldn’t feel pain they had no way of knowing if I was getting worse. I asked if that wasn’t exactly what the routine tests were for and he said that it wasn’t of my concern and that it was his job to decide if I was worse or deserved any other meds, not if I needed them but if I “deserved” them…

He refilled my Prednisone. He ordered Asacol and Imuran. I told him that I thought Asacol was the same drug as Salofalk and he said it was. I told him how horribly sick the Salofalk had made me and I told him about the Imuran as well. He said I was full of it and I said I was not. He said that things do change and this was what we were going to try, I could just go home if I didn’t want to do it his way.

I took the meds, I tried again. I had the same issues. I went back and I told him the meds were killing me and his only answer was to double everything. I took them, I don’t know why, and I got sicker. I threw them out and gave up. I told him I was not going to take them anymore, period.

He told me that since I was classified as “non responsive to meds” he would have to order Remicade, he said that it was my last option. I had read great things about Remicade so I was excited, I was almost out of my skin with happiness. But then it all came apart in front of my eyes. The Remicade was $3000 per infusion. I’d need 3 or possibly 4, the first two would be two weeks apart and then one to two more at six week intervals. I didn’t have the money, I’d need provincial financing…

He refused to write the order/request to the provincial formulary.

He told me that it wasn’t his job, he said that it was up to my financial case manager at HRD because it was an issue for my provincial disability claims. He said I’d have to discuss it with the case worker.

I contacted the case manager and he said it had nothing to do with him, he explained that the doctor had to write the prescription and fax it to the formulary along with a note explaining that it was a “last ditch” and that nothing else was working. He said it was entirely the doctor’s job.

I went back to the doctor and I told him this but he disagreed, yelled at me that I was stupid and didn’t know a damn thing and that he didn’t have time to take coffee breaks and waste his valuable time faxing things that weren’t his job.

The fight went on, just like that, for nearly a year.

Finally, I contacted the formulary. I found out exactly what needed to be done, what was the proper procedure, who was supposed to send in the paperwork. They confirmed exactly what my financial officer had said, the exact opposite of what the doctor had tried to tell me. I downloaded a PDF file of the formulary regulations and went to my next appointment armed with government facts.

The doctor was enraged. He again told me how stupid I was, he told me that I was wasting my time and his. He stomped out of the room and yelled that he’d fax it but then I’d see, it wasn’t his job and I’d find out when they sent me a letter denying my wrongfully filed claim. Whatever, I knew the truth and I just wanted him to send it.

Six weeks later I got the approval.
I should have read it closely.
I would have known right then just what an asshole this GI really was.

I got the precious bottle of medicine from the pharmacy and I made my appointment at the hospital. I went in, got the infusion and sat there thinking about the future. I had five hours in the chair, hooked up to tubes and monitors, to think about everything and there really was much to think about.

When it was finished, a nurse told me that they had to schedule the next appointment that day, it needed to be in two weeks time and she asked if I’d brought the next dose or if I was going to get it put through the hospital pharmacy so they could just get it and keep it right there, that way I wouldn’t need to worry about taking care of such a small and expensive bottle. I told her I guess that was the best idea so she got my pharmacy info and she went and started typing and calling.

She came back and said there was a problem.

It turns out the the doctor wasn’t as stupid as he made out to be. He had finally called it in to shut me up but he’d only ordered a single infusion. He knew that there would be three and that the first two would be two weeks apart. He knew that another order would take 6 weeks for approval. He knew that he was fucking me the day he faxed everything to the formulary…

I went home in tears.

I was so frustrated. Why would a doctor do this to someone? What had I ever done to him? Why was he so horrible? What were the Gods trying to prove to me? What Gods, this couldn’t be happening, this was so terribly wrong on so many levels…

I didn’t even call him because about a week later I found out that I was pregnant. I got my family doctor to refer me to a good ob/gyn and I went in to see him. He decided that my condition was serious enough to warrant “high risk management” for my pregnancy. He really didn’t even believe that I’d be able to carry the baby, he was almost certain that I’d miscarry or worse. He didn’t tell me that until much much later, after I was in the safe zone…

At the request of the ob/gyn I called the hateful GI and he told me that he would not treat me under any circumstances during my pregnancy. He said that it was not his job (a familiar refrain by now) and he told me to call him again no sooner than 8 weeks after the delivery. If you can believe it – I was actually relieved, this guy was trying to kill me, I didn’t want him within fifty feet of my pregnant belly.

No way was he going to destroy my baby, no way in hell.

I made it through the pregnancy, my Crohn’s even seemed to back off a bit. The baby came out perfectly healthy and energetic. I was exhausted but I was getting by. The Crohn’s had started to show itself with its former demonic face in the last weeks of the pregnancy and it started to wear me down but we got through.

I didn’t want to go back to the GI but I called my family doctor anyway. I got him to schedule another appointment with the asshole and it was set for many months ahead. With only a few GIs in a city with a population of 168 000 not counting the outlying counties who had to depend on our hospitals and doctors too, it wasn’t surprising that all of the specialists were backed up as much as 6-8 months.

During that time, I had gone in to have an IUD implanted and its standard to perform a pregnancy test first. The test was positive. My Crohn’s was at its worst yet by then and I was scared to death. My ob/gyn went through half a dozen different phases from “maybe we can do it” to “you won’t carry long, you’ll likely lose it in a bad way” to “its dangerous to even try” then back to “you might survive it, the baby probably won’t” then still “you both may not make it” and finally “we’ll try, you will probably be ok“.

Probably wasn’t good enough for me, not with as many times as the outlook had changed in just a few weeks. I went through hell at home, I cried for three days straight and I broke down in every way imaginable. I had this feeling, this solid knowing, that I couldn’t handle another pregnancy, I was certain that I would die in the process. Nobody could assure me 100% that I wouldn’t die and nobody would just say it, it was best to get a termination.

I was always pro-life.
I didn’t murder my baby.
I wasn’t some irresponsible youngster who didn’t bother with protection.
I wasn’t heartless or evil.

I was scared.

and I had four other children, alive and well, already born and in different stages of growth, and they needed me, whole and alive. My love needed me, my best friend needed me. I had no other family, just these precious beings, and I needed them too and I was not prepared to abandon them for a “maybe” or a “probably“.

I decided to terminate the pregnancy.
It was the most difficult decision of my entire life.
I cried and had nightmares for nearly a year afterwards.

Obviously I missed the appointment with my GI and to be totally honest – I didn’t believe I deserved help any longer, I believed that the pain was my cross to bear for the horrible crime I’d committed for killing my innocent baby…

I know that there was no other option, it wasn’t an act of convenience, it was an act of survival.

After that passed and I’d finally started to come out of my dark cave of depression, I began to refocus on family and life and trying to get better, I was finally sick and tired of always being so sick and bloody tired.

I went back to my family doctor and begged him to try to get me an appointment with any other GI, I told him I’d travel out of town if necessary. I told him that I had provincial funding if only he could find another GI doc willing to see me. He told me that I should canvass doctors and if any said they were willing then he’d certainly send the referral.

What I didn’t know and he did was that no doctor will just chat with a patient until their family doctor refers them, my canvassing was over before it started really. I called a pile of doctor but nobody would even give me time of day, they all had their receptionists tell me that they’d need to hear from my family doctor with a referral before they’d even hear me out.

I convinced my doctor to send a referral to a GI doctor in Fredericton and that doctor declined to see me, even for a single visit. He was breaking the law at that point – a doctor in Canada must accept a referral for a second opinion by law, this doctor just wasn’t playing. I wouldn’t recommend him to anyone seeking serious help.

Still, nothing was getting me anywhere.

I wrote to a ton of people, local and distant hospital regulation admins, doctors, social workers, provincial and federal health care ministers, I even wrote to the registrar of the college of physicians and surgeons for my province.

Nothing.

I took it to the web – I blogged it, I gave the story to another local blogger/activist, I posted it everywhere that I could. I told anyone who would listen, I wrote to the CCFC, nobody could do shit.

By this time I was suffering full time diarrhoea – 4-8 times an hour, I was sleeping maybe 3 hours a night with the bathroom runs counted in, I had agonizing pain from head to toe, I was bleeding from my urethra and my bowels, I suffered continuous infections of the abdomen and the bladder, I could only eat a few bites of food each day and what I could eat caused severe horrendous pains and cramps. There were several more symptoms but those were/are the worst.

Nobody seemed to care, especially the so-called “community resources” put in place to help people in my condition. Not a single hospital group could or would do anything, the CCFC was completely bound, the health ministers sent me form letters thanking me for my contact, the social workers felt bad but it wasn’t their job, the registrar said that I should maybe call back my former GI and start anew.

I developed serious bladder/abdominal infection and I rushed in to the local ER. They nurses acted as though I was some kind of leper and they were afraid to infect themselves. I had a fever and I had been vomiting, I had cramps so bad that I couldn’t stand upright, I was bleeding from the rectum and having violent acidic diarrhea, there was blood mixed with greenish mucous and bowel matter clogging my urethra and kind of glopping out when I urinated.

Nobody did shit.

They jacked me full of percocets and morphine (yes, on the same night, barely a few hours apart) and basically left me in a corner. They took a single blood test to make sure it wasn’t my gallbladder and they fucked off for parts unknown. It was several hours after my arrival before they sent a real doctor to see me. He came in, palpitated my abdomen, asked if I had eaten or drank anything different, he got a really angry demeanour when I flinched at his examination of my abdomen, at that point the elastic of my panties was causing untold agony just by existing. That was when they hit me with the morphine, because I was crying, they don’t like that up there.

They took a urine sample that was filled with chunks of feces and blood clots as well as thick strands of infection. Hours later I asked them if they’d gotten anything from it and nobody remembered that they’d taken the sample in the first place. That happened twice more that night. Same thing each time “What sample? Are you sure someone has seen you?” They kept forgetting that I even existed.

After about fifteen hours of wandering through the ER all doped up and begging someone to just fucking help me — they came and said that perhaps I should just go home and come back first thing in the morning. They gave me a happy little pouch of percocets to take with me and sent me on my way. I’m sure they thought that was the last of me – after all, poor people only go to the ER for drugs, right?

That’s what happens here anyhow, they’re convinced that anyone who is strapped for cash must be a junkie or a dealer. We don’t really get sick, we don’t really need decent help, we’re all dirty and scummy…

No, I’m not making this up or being bitter –
I have heard our honourable local nurses chatting.

I went back to the ER the next morning as promised, my fever hadn’t gone down and the percocets were barely taking the edge off. I was seriously dehydrated at this point, hell the night before they had to bring in a special tech to get the one blood sample they took – I was so dry that my veins wouldn’t give up the goods.

So now I was in real great shape. Twenty some more trips to the bathroom to blow nothing but mucous and stomach acid out of my butt and a few serious blasts of the dry heaves — the blood vessels in my left eye were all busted, my eye looked like I’d been popped with the end of a baseball bat because of the strain from all of the puking.

Several hours of sitting there again and finally a different doctor comes in to see me. He doesn’t order any tests, doesn’t read the file from the night before, doesn’t perform even the most rudimentary of examinations. He asks for another urine sample as though there haven’t been any done yet and he asks if “maybe you think that you maybe might have a bladder infection?” which causes me to laugh out loud on the very border of complete hysteria.

I describe everything all over again and I tell him about my “treatment” of the night before. I describe the lost urine samples, remind him that I have Crohn’s Disease and that these symptoms could be septicaemia or even worse.

He nods a few times, makes some odd deliberating sounds and starts writing. I end up leaving with a prescription for a bottle of percocets and a hefty dose of an antibiotic (cipro, the same shit they trucked in by the crates after 9/11 for potential anthrax infections) to be taken twice a day for the next ten days.

Luckily for him I survived and the antibiotics did the trick, for the bladder infection anyhow, nothing else was remedied…

So I went back to my writing campaign but not with the real heart to fight anymore. I had pretty much decided that in the eyes of the government – I was expendable. Nobody was willing to help – “Its not my job” a familiar refrain by now.

Yes, I gave up. Inside of myself I had almost completely let go. I gave in to my destiny and I got my family doctor to send me back to the GI doctor who (I believe wholeheartedly) was actually trying to kill me. When I finally got to his office – I am sure that he was aware of my complaints about him to everyone I had written to, especially that registrar fellow. His receptionist informed me that they’d archived my files and then somehow lost them, there was NO documentation of anything that I had already been through.

I was mad. Incredibly flaming fucking mad.

I had a few bits and pieces that he’d sent my family doctor though, and even those shreds were enough that I could have had that bastard for malpractice and intent if I’d had the money to call a lawyer. He knew that, he played nice to me. I almost bought it too, I figured that maybe I’d scared him straight, at least in my case. I was praying that this time he’d take action.

I was so incredibly wrong.

He set me up to come in for another colonoscopy and I went for it. I was supposed to go back and get the results in a few weeks and because of circumstances (I had developed a serious flu or something similar and had no possible way to get across town to his office) and I had to ask them to reschedule. This was September and the results were to discuss several anomalies they’d found during the scope. I explained that to the receptionist and she said the very best she could do was set me up for an appointment in late February. I asked if they couldn’t just tell me then, on the phone but she said no so I asked if they could send it to my family doctor so he could at least read it to me. She got very angry and said that was not procedure and I said “Fuck it.” I knew that a new GI doctor was coming to my city soon, he was replacing the only other two GIs we had because they both retired within the prior six months. She gave me his name and number and I immediately called my family doctor with the name.

My family doctor hooked me up with prednisone and pain meds to “get me through” and then I just sat around an waited. I had an appointment set for February with him as well but this time, I knew that I could handle the wait.

I developed a serious abdominal infection just weeks before I was to go see the new doctor and I had to go to my family doctor to have it treated but I finished my antibiotics on the day that I finally got in to see the new doctor.

That is really where the current leg of this journey picks up (diary entry April 1st, 2009):

Yesterday was the big day with Dr G. I was scared half to death that he’d be just like all of the others but he proved me wrong, very very wrong, and I am ecstatic. Dr G is young, very friendly, soft eyes and he listens when you speak. If you ask questions – he actually answers them and he takes notes throughout. He doesn’t just skim your file for keywords – he reads it and asks about prior symptoms and circumstances. I like him.

We have a series of tests to run and we’re adding the results to a dossier, that dossier will go with me to meet the regional director of the Remicade Outreach program. Her and I will fill out the rest of the papers, then Dr G will add his papers and we’ll forward them to the province for approval. Once they’re approved – I will have a series of Remicade infusions and those carry a 70% chance of remission and a 90% chance of improved quality of life even if they don’t bring remission. Within 4-6 months at the latest we’ll have the treatment underway. Before the year is out – I may well have full remission.

Until then – I have percocet to keep me company.

This is totally not an April Fool’s prank either, Dr G is serious about doing everything he can to save me and I think I might just be really freakin’ happy about that. So yeah, smiling, much. Rockin’ eh?

Later I think I may try to do a painting, in honour of the rainbow of hope that is blowing out of my everything right now. If I do — I promise to bring it here, this is where it belongs.

And now, I return you to your regularly scheduled programming.
This, is my life…

UPDATES:

Friday July 17th, 2009: I got the approval slip in the mail from the provincial formulary.

Tuesday July 21st 2009, 12:30 PM   RIN (Remicade Infusion Network): Hooked up to my first Remicade infusion. I got a call this AM telling me that they had a cancellation and would I mind coming in sooner than previously expected. Its late at night the first day–no bad reactions, no side effects, looks like I’m on my way. Now we just wait and pray that it has the desired effect.

October 23, 2009: I’m slated for my fourth Remicade infusion on November 4th and I’m wondering how I ever made it so long and so far without it. I still have crashes and I still have 24/7 symptoms in that I must watch carefully what I eat, how much sleep I get, I can’t allow myself to get too stressed, etc. however things ARE getting better, slow but surely. I can now eat at least one meal a day and I have the energy to go for walks almost daily. I’ve been going out socially again here and there, hell, I’ve even danced and had a few beers periodically, that is something I never thought I could do again. Bottom line is–I’m coming up, if it takes me two years, or more–I can feel the changes in my body and most importantly, in my soul. I’m not dead now nor am I even remotely close to dying in my opinion. If you’d asked me that five months ago–I couldn’t have told you I’d be here today to write this update.

February 8, 2010: The Remicade is failing. I have an appointment with Dr G on March 5th to discuss options. Its almost guaranteed that I can’t make it through surgery and there are no other viable treatments that I can afford to try. It may be time to start tying up loose ends, I do not know. Only time will tell.

February 15, 2010: I just fought off yet another serious bladder infection, the fistula was inflamed and the infection nearly went systemic. I was passing blood and infected mucous when I urinated and I couldn’t lie down or stand totally straight for over a week and a half. The cramps were agonizing.

On the tail end of that, the strictures (which showed as “moderate” on the last CT scans) have worsened. Tonight the blockage became so severe that the pressure backed up and I vomited harshly but at least the pressure is off my belly, for the time being. Last night the blockage began with nothing more than bread and a few bites of tuna, I haven’t eaten more than a sandwich or a fruit cup each day for weeks, if not close to months. I’m down to 105lbs again, this is getting scary.

We’re expecting and have been advised, there will likely be surgery on the very near horizon, nothing else is working, nothing.

April 29th, 2010: I’ve had an rx in my purse for weeks now for something called Methotrexate. I’m setting up the appointment with my regular Remicade nurse (Christine says May 24th) so that I can learn to give myself the injections, once a week, probably forever. This will be hand in hand with the current Remicade therapy, and god knows what else is to come. Wish me luck.

May 24th, 2010: Victoria Day, I went to see my Remicade nurse Christine (she came in, without pay, on a holiday) and she taught me to do the injections. I had my first Methotrexate injection that day and will have one every Monday from here on out. I had no ill effects but Methotrexate must still be monitored closely (regular bloodworks every four weeks) as it can cause liver toxicity and sometimes liver and/or kidney failure. Wish me luck *crosses fingers*

July 18th, 2010: This is where I end the updates to this section. You can catch up on the rest in my day to day blog. Currently the methotrexate is making a difference. I’m better than I have been in many years and I’m not complaining. Things are slow going, I still have more bad days than good and they’ve told me that I likely always will, its a fact of the damage that’s already been done that is completely irreversible. Had my disease been taken care of many years ago when I first complained, or even many years after that when they finally believed me and diagnosed me, I may be in a different boat today. Because they ignored my very real and very serious complaints for as long as they did: no amount of meds or therapy will ever give me a normal life. Nothing will ever give back to me the life that they took away. The disease could have been caught and stabilized, they denied it and now I will suffer much worse than I should until the day that I die.

Currently, my meds cost close to $19k a year. I am currently covered by federal and provincial funding (after a long uphill battle) but many are not. If you believe that everyone has a right to live: please think about this wherever you are, when you go to your local voting offices.

*IMPORTANT ADDENDUM:
October 26, 2010:
Where do I even start? I’ll try to keep this short and to the point.. Dr G told me today that I have hit the top. This is as good as I will ever get without surgical intervention, in fact–there is a really strong chance that I’ll start backsliding if I don’t opt for surgery. He’s willing to let me go on as I am now, status quo, with my current treatments if I so choose but I can tell he’s worried about that. At ten to fifteen years active is when Crohn’s generally starts to show bad cells as in “The Big C” and I know that’s weighing heavily on his mind.

The surgery is not without potential serious risks but if I ever want any sort of improvement, it is my only chance, period. I’ll get more into that in a moment. Right now I want to explain a bit more of the intricacies of my disease at it’s current state (as of two years ago now, my last colonoscopy) he says the disease is focused in my colon and in my small bowel. He says (and I’ll quote him) “It’s pretty rotten” as well, there is a serious stricture that has been the main cause of most of the more agonizing pain that I’ve suffered. It’s a thickening of the walls in a spot in my bowel that could completely close off if left alone. That can cause many terrible things that I don’t wish to think about right now but annnnyhow..
There is also that fistula in my bladder, the rip that goes through to the bowel, he says if it hasn’t closed after two years of Remicade then it isn’t going to. Unequivocally I am NOT going to get any better if I stay on this course of treatments. It can only go down hill from here. He says it might remain at this level indefinitely or it could worsen at any time, there is NO way to predict or judge anymore. If I remain as I am now, it’s nothing more than guessing and hoping at best, we won’t talk of the possible worst.

Back to the surgical option..

Dr G assures me that he has never lost a patient. He says that they need to run some of the main diagnostics again (colonoscopy, upper & lower GI, blood works) to gauge exactly where I am now and to get an idea of what would need to be cut. I’m definitely going to lose quite a bit of my guts if this is the option I choose. There is quite a risk for anyone undergoing a major surgery like this but it’s especially high in my case since my system is so drained and damaged.

He is a good doctor and I trust his choice in surgeons.. I guess I’m just scared. My gynaecologist was afraid that a simple tubal ligation would be potentially life threatening to me so where does this fall on the danger scale? I have no idea.

If I opt for the surgery, there are many factors to be considered, not the least of which being–what if I don’t make it? And if it’s successful, where does it stop? What kind of situation am I facing after the fact? We know there’s a likelihood of an ostomy, at least for the interim and potentially forever. We just do not know.

I’ve asked Dr G to give me a few months going the same path we’re on currently. I want to do some heavy research and think about things. I have many things to consider and many hard decisions to make in case I do opt for the surgery and things don’t go so well. I’m not being pessimistic, I’m being realistic, there is a chance it could be the end so it’s best to leave Miss Mary Sunshine in check and prepare for any and all potential outcomes. I have to go see him again in January with my decision.

Dr G has also warned me that there is a slim chance they could open me up, assess the damage and decide it’s safer not to proceed at all. It does happen. If that were to happen, it would be a matter of simply medicating me as I need and keeping me comfortable and hopefully on the same sort of plateau that I’m on now.

I think I know what I’ll likely decide but I just got this news today and I’m pretty shaken up. On the one hand, I’m relieved to finally have a definitive prognosis but on the other hand–maybe I was better off not knowing after all. No matter what I decide, there are so many terrifying potential outcomes.

Am I scared? You bet your fucking life, and mine.
Goddess be with me, I’m so bloody lost.

August 15, 2011: I haven’t updated this page in far too long. On March 14th 2011 I went in for the surgery, yeah the big one. I was in the hospital for 13 days and many of those days were a blur. There was a mishap with the anaesthesia right after surgery, I’d opted for the epidural block and it failed. For 13+ hours I laid in that bed, freshly stapled together, in the worst agony you can possibly imagine. My surgeon had to fight with the higher-ups of the hospital to get something, anything, up and into my IV to end the agony.  You can read that story *here*  I now live with a stoma and an ileostomy but I am alive, that is what matters the most. You can meet “Bob” in this post and learn a bit about him, and if you read *here* you can see how we’ve come to creatively coping, together, as it should be.

As my surgeon was releasing me from the unit to go home, she told me that my case was the worst she’d ever seen. She said that if I’d missed that surgery by even a few days: in all likelihood — I would not be here today, I would not have made it at all. I am here though and I certainly plan to make the absolute very best of it!

Thank you for reading.