My diagnosis story

I mentioned in an earlier post that it took 4 years between when I first had (what I now know are) Crohn’s symptoms and when I got diagnosed. The on-again, off-again, unpredictable gut and arthritis symptoms I was having during those years were often difficult to deal with, but I initially was able to cope — mostly by changing what I ate and eliminating activities that caused pain. I put a lot of energy into hiding my symptoms and pretending that I was fine. As time wore on and my symptoms became more severe and long-lasting, though, I spent more and more time visiting my GP.

I must be a liar who wants drugs

My GP was a wonderful doctor who had helped me very much during the previous years, especially when I had a lingering case of mono as an undergrad. It was especially discouraging for me to see my GP look more and more tired and suspicious of me as I kept returning with the same symptoms, over and over, for several years. She tested my stools for infectious bacteria repeatedly, but the tests always came back negative, and the diarrhea always resolved by itself — eventually — only to return in a few weeks to months. She prescribed X-ray after X-ray of my pelvic region to attempt to diagnose my hip pain, but nothing significant ever showed up. I also kept contracting bacterial tonsillitis, which meant I had to go on antibiotics, which gave me even more diarrhea and caused yeast infections, which meant I had to go on antifungals, which made me more susceptible to bacterial tonsillitis — her office should have had a revolving door. I was in there several times a month for a while. My hip pain also got progressively worse, to the point where the painkillers I was on were not sufficient. I was lying on ice packs every night just so that the pain would be blocked out enough for me to sleep. Every time I’d see her, she had a more frustrated expression and less time for me; I got the impression that she thought I was making up some of the hip problems in order to procure narcotics. I hated being treated like a malingering wanna-be druggie. It got to the point that, unless I needed a prescription for antifungals or antibiotics immediately, I would avoid going to the doctor at all.

Pop goes the hip bone, 1, 2, 3!

Too sick to engage in regular activities other than attending classes, I spent a lot of time sitting around at home. My muscles became weak from lack of exercise. Now, I am a very flexible person. To this day, if I stand on stairs, I can lean forward as if to touch my toes and bring my hands down below the level of my feet. Unfortunately for me, the flexibility of my tendons caused even more problems back before I was diagnosed with Crohn’s: without the bulk of muscle holding my hips in place, the bones had new room to move around.

I dislocated my hip the first time while packing a suitcase, coming back from a holiday. It was in early September, and I remember being on crutches for several weeks, and still hobbling around in my Halloween costume more than a month later. A few weeks later, just after that hip started to feel OK, I dislocated the other hip. I was walking across the room when it happened — not even in the process of getting up or sitting down. Somehow I managed to get a referral to the university sports clinic. The intake questionnaire asked whether I had sustained my injury in a traffic accident or while doing sports. I wrote that I had injured myself during “extreme walking across the living room,” which raised some eyebrows (but they decided to treat me anyway). I was examined and prescribed physiotherapy to help build up muscles so my hips wouldn’t dislocate again, and therapeutic massage, to help with the spazzed-out muscles and tension.

I felt really bad for the fantastic RMT who massaged my back and hip area weekly. I would go into her office, limping, and leave it, limping even more badly. Massage hurt — even as she relaxed my muscles, she was not able to do anything about the underlying inflamed joints, which objected mightily to being manipulated. She told me she was frustrated that I was not only failing to improve, but seemed to be doing worse after every treatment. She was a skilled professional with a sympathetic ear at a time when most professionals I had started to see were far from it.

I performed the physio exercises regularly and began to feel pride as I could increase the number of reps from week to week. I was losing weight and craving protein — eating more than one can of sardines per day, for instance — which I attributed to being pumped from the physio. I had dropped from my normal 112 lbs (51 kg) to 105 lbs (47.5 kg), the weight I had been when I was 18. I felt sexy.

Things seemed to be going well when I dislocated my hip again. To be honest, I don’t even remember how it happened the 3rd time — probably extreme walking in the house again. But this time, I was sent to a physiatrist. I remember lying on the examining table after a long and painful struggle to get onto the table (the nurse was glaring at me), and being unable to hold back tears when the still-glaring nurse gently tried to turn my foot so my toes were facing in or out. I am a stoic person and I was embarrassed about this. I absolutely did not want my boyfriend at the time — who was absolutely stellar in caring for me during all this craziness — to see me looking as vulnerable as I felt.

Now, I’ve been talking so far about dislocating hips here and there as if it is just something that happens casually and doesn’t really require explanation. I have to say that it is not like that at all — it hurts like hell. I have never had pain like hip dislocation ever in my entire life, and that includes the Crohn’s-related gut pain I experienced in the years that followed. If you have ever had a kink in your neck or lower back or something like that — it is like that, but much worse, because the muscles that seize up (attempting to push the hip bone back into its socket) include the gluteus maximus (buttock) muscles, the biggest muscles in the human body [Footnote 1]. The pain is really, really bad — it is bad enough to require treatment with narcotics, in my case, codeine.

Drinking drugs is a pain in the ass

As things turned out, I was allergic to one of the fillers that was in all the codeine pills available, so I had to use a liquid formulation of codeine instead. Codeine for kids! Seriously, though, it was super-bitter and nasty. The good thing about liquid codeine is that it starts working almost instantaneously. The bad thing about it is that there is no way — unlike drugs in the form of a pill — to make it long-lasting. It lasted 4 hours, and that was it. Believe me, I knew by 3 hours that my dose was wearing off. That last 1/2 hour was something else.

So I had been on and off codeine several times over the months that I had been dislocating my hips. Luckily for me, I never became addicted. I quite dislike being fuzzy-headed from codeine and I was able to quit using it whenever my hips settled down, without any noticeable withdrawal. Perhaps unluckily for me, though, codeine, like other narcotics, has the side effect of causing constipation. My guts were falling to pieces during the whole time my hips were acting up, but I didn’t know it, because I was constipated from the codeine. The only gut symptoms I noticed (other than pain, which I was rather used to by then) were bad anal fissures. Sorry for mentioning this gross thing, but it would be almost dishonest to write a blog about Crohn’s and leave out some of the details of what it’s really like, especially when my symptoms were conspiring to make me into a much wilder and kinkier person than I actually was.

. . . make that a promiscuous, kinky liar who wants drugs

See, I was not just having hip problems and gut pain, but all my mucosal tissues were ulcerating and self-destructing. This included my mouth and vagina. My GP looked at my weird ulcers “down there” and sent me to a gynecologist. This was a gynecologist I had never seen before. He examined me and, while he was examining me, told me that I looked skinny for a woman my age, and asked me what I had eaten for breakfast. “French toast with maple syrup,” I said, completely truthfully, not really understanding what he was getting at. “You’re lying!” he said, and told me I should get help for my eating disorder. He also told me that I had herpes, and that I need to contact my previous sexual partners and let them know. I then had the mortifying task discussing this with my boyfriend, who swore he couldn’t ever have possibly contracted anything because his only other partners were both virgins, and with my previous partner, who had also been a virgin (as had I). It didn’t make any sense, and I felt humiliated.

My GP also sent me to a rheumatologist. I only saw this rheumatologist twice. During the first visit, she looked at my joints and at the crazy rashes (including erythema nodosum) I had started to develop and said that I probably have lupus. She had me do some tests, one of which involved watching radioactive tracer dye go through my system and be drawn into the inflamed areas, highlighting the problematic bits of my hip joints (I felt bad about peeing lots of radioactive stuff into Toronto’s sewer system). During the second visit, after she got the various tests back, it was clear that I didn’t have lupus. She actually got angry and yelled at me that I was being deceptive because I don’t have lupus! I complained about her unprofessional behaviour to my GP. I’m not sure whether my GP believed me, but at least I didn’t have to go back there. Instead, I was sent to another rheumatologist, who examined my hips and said that there was inflammation there, but there was no real way to treat it other than with steroids, and he didn’t think that steroids were right for me because of their system-wide effects. I was left relying on ice packs, Tylenol, and when things got awful, codeine.

I don’t swallow

One day in January of 2002, I was eating Kraft Dinner with my boyfriend, and I had to stop a few forkfuls in. The overcooked pasta slid down my throat like broken glass chased with whiskey — it scraped and burned so much that I could not eat. What had seemed like ordinary heartburn over the past few weeks became constant, and then the throat pain got to the point where I could not swallow unless I drank my liquid codeine (left over from the hip dislocation) first. I went to see my GP again.

My GP looked at my ulcerated throat and rashes and sent me to an infectious disease specialist (my bloodwork was crazy, but there were no infectious disease agents in it) and an immunologist (crazy bloodwork again, no obvious explanation) before heading on an extended holiday for 6 weeks.

I was in very bad shape. I kept losing weight because all I could swallow was liquid codeine followed by tepid jello. (No jello before codeine — that would have been too painful). I was feverish, dehydrated, getting chills, etc., and totally out of it because of the starvation and drugs. I had to go on sick leave from my program.

I went to my GP’s office again. At this point, I was going several times a week, by taxi, because I was too weak to walk (and getting into the taxi was quite difficult, too, with my post-dislocation pain and limp). A locum doctor was there in place of my GP. After she saw me coming in with a near-inability to swallow, she looked through my chart at the the parade of specialists I’d been sent to and asked me if I’d ever seen a gastroenterologist. I had not.  She booked me for an esophagoscopy right away.

Diagnosis at last!

I don’t remember too much of what happens next, because of the starvation and codeine and anesthetic. I remember a very kind gentleman in the Gastroenterology waiting room urging me to see my GI before him because I looked to be in such bad shape. (I know now that many GI patients come from out of town and travel for hours for their appointments, so this man was particularly kind). I remember at one point being told that my esophagus looked like someone had slashed it with a razor all over the place. My family members arranged with my GI for me to be admitted to the hospital to get a colonoscopy later in the week. As soon as my GI saw the sorry state of my guts, I had a diagnosis: severe Crohn’s.

I began to feel better almost immediately — not cured, not by a long shot! — but happy. I now had a proper diagnosis and a medical team that believed me, and I felt hopeful, because Crohn’s is a known entity and it can be treated. No more languishing in pain at home, afraid to see doctors who might look at me as though I were faking symptoms, lying about my lifestyle, or looking for drugs! Now I had prednisone, which started working right away to give me energy and healing powers I had not experienced in months.

My GP returned from her vacation during the time I was in the hospital. My pumped-up-on-steroids self phoned her from my hospital room. When I got her on the phone, I said “Hey! It’s me! I’ve got Crohn’s disease!” — probably the most joyful announcement of anyone having Crohn’s disease that has ever been uttered. My GP was a model of kindness to me from that moment on — she felt absolutely awful that she had missed my diagnosis for so long, and I was glad to be able to return to a relaxed and trusting relationship with her, and to forgive her for acting suspiciously toward me for the last few years. As she said, “hindsight is 20/20,” but, to be fair to her, the order in which my symptoms appeared was rather unusual for Crohn’s, hip pain is not a common symptom, and my diarrhea — typically the most diagnostic symptom of Crohn’s — was not obviously Crohn’s, because I had been on and off antibiotics (which cause diarrhea) and codeine (which stops diarrhea) for so long. I was a zebra.

Recovery is ongoing

Within a few days, my esophagus had healed enough that I could eat. After a week, I was able to go home, though I spent several more months just eating, doing physio, and recovering enough strength to walk; a week after I left the hospital, I weighed only 92 lbs (41.5 kg).

92lbs edited92lbs-front-view-dot

March 2002, back from the hospital. I had already gained weight by then.

I was in a wheelchair for weeks and would get exhausted enough crossing a room that I had to lie down and rest. I was too weak, in fact, to lift a frying pan to cook my own food! The combination of prednisone and starvation had me eating 6-packs of chicken legs all in one sitting, then getting up again in 2 hours to eat entire cans of fish, and so on, for weeks on end. In the mornings I felt better than I had felt in ages, but every afternoon I would lie down and push a heating pad turned to maximum against my bloated, painful guts, as they struggled to both heal and digest everything I ate. Eating became a kind of torture: I was so, so, so hungry, but I quickly learned that every mouthful would bring sharp pains within hours. It took months to build up a population of “friendly” bacteria that would allow me to digest vegetables, and even longer before my epithelial cells healed enough to allow me to eat dairy products. It was a big step for me to be able to eat cheese again.

The days after diagnosis were also difficult in ways that I had not anticipated during the thick of battling undiagnosed Crohn’s. Aside from physical pain and weakness, there were prednisone-related mood changes and body-image challenges: I got Cushing’s syndrome so badly that I my cheeks swelled to the point where I could not whistle and I developed a hump between my shoulders like a water buffalo; acne broke out all over my face, and I gained more than 30 lbs (30% of my weight!), which turned my body shape “from Twiggy to Piggy” in under 3 months. (I felt that my face resembled a Campbell’s kid undergoing puberty, while my body resembled a popsicle — outrageously swollen upper body on top of weak stick legs).

puffy-May-2002-dot

May 2002, with a double chin, barely able to fit into my normal clothes.

On top of that, prednisone depresses the libido, so I most definitely did not feel sexy. (I’ll save all the stuff about relationships and Crohn’s for another post).

Through all this, I felt strange, frustrated, ugly and confused, but also grateful to my doctors, friends and family who did not think I was crazy and relieved to no longer have to hide my illness from the people I interacted with on a regular basis (though my skeletal appearance and eventual absence from class made it pretty clear to my colleagues that something serious was going on even before I got the official diagnosis). Most of all, having a diagnosis gave me an opening to hope that I could eventually be able to have a decent quality of life, a quality of life I had not had in years.

—————-

[Footnote 1] It is always difficult to compare the pain that different people experience from different things. There are several standards of pain measurement in medicine. One study I remember reading about compared the pain of childbirth to the pain of having a finger cut off. I have not been able to obtain the actual article to see how many 9-fingered mothers were interviewed in order to obtain this information. 🙂

This entry was posted in arthritis, bias, diagnosis, diagnostic tests, disability, evidence-based medicine, food, frustration, gut problems, hidden disability, immune suppression, mania, misdiagnosis, mobility impairment, prednisone, rash, relationships, relationships with medical professionals, side effects, steroids, symptoms, treatment, ulcers. Bookmark the permalink.