Out of whack

Some things are disproportionally painful for the injury to which they belong. The funny bone is an obvious one or when you accidentally brush a finger against the hot roasting pan. Todays CRI is a perfect example. (Couch related injury. See, it happens. It's a dangerous lifestyle I lead this not working thing... but I digress...).

This afternoon while casually sitting on the couch trying to wrangle Lil' Edges who has turned into a wriggling squirming fiddling muppet over night, I caught the edge of my fingernail on something which tore it and then in the course of my sudden jerking movement, I proceeded to stab myself under the fingernail WITH MY OWN TORN FINGERNAIL.

"Oh fudge, you melon farming biscuit of an owie*"I exclaimed, grabbing the baby in a football hold with my good hand and running like mad for the bathroom to both clean up the blood and somehow remove the offending fingernail from it's excruciating location. 

Why should a fingernail injury hurt so much? If pain serves to warn you of the potential harm of an injury, to get you to stop doing whatever it is that's injuring you, why then does having something shoved under a fingernail make you want to hack your own arm off with a meat cleaver? Fingernails aren't really that important. Not in the grand scheme of things. 

Get back here cat!

Tooth pain is another example of disproportion. Can you imagine being a caveman with no colgate or dental floss or water fluoridation (or even dentists for that matter) to protect your teeth and gums? What did those poor bastards do when they inevitably cracked a tooth on a prehistoric chicken wing? It's my belief that the ridiculous amount of dental pain probably led them to jump in front of an oncoming Sabertooth shouting "Eat me, for the love of Mergatroid, just fucking eat me."

I broke a toe (and a wrist and once a bone in my foot) none of these really rated very high on the pain scale. The toe went a lovely shade of purple and throbbed a bit but mostly, as long as I didn't stub it on any furniture it wasn't too bad. I never once contemplated a home amputation or knocking myself unconscious with a heavy based frying pan. Surely a broken bone trumps a broken fingernail? Shouldn't my body be more concerned with things that may actually be problematic should I need to make a hasty getaway from an emerging predator? 

Why does a minor burn, so minor that it barely even tints the skin pink, need to throb for hours? Yes the pan is hot, I get it nervous system, you can stop sending the pain signals and release the endorphins. And yes, this ice cream is cold, thanks for alerting me via brain freeze before I wound up with frostbite in my throat. On a similar note, thank you teeth for that sharp nerve sensation when I eat something really sweet, God forbid I die in a horrible Pavlova incident.

Seriously, unless the injury requires actual medical attention (and no running something under cold water or putting a Flintstone ouch-aid on it doesn't count), then I don't want to know about it. If tearing a fingernail at the quick is a 1 on the serious injury scale and being decapitated by a low flying helicopter is a 10, then I don't want to be bothered for anything less than a 3, say a gash requiring at least 6 stitches. 

Harden the fuck up, nervous system.

*Or words to that effect

Becoming Complacent

In a recent conversation with a woman I am just getting to know I mentioned in passing that I had this transfusion thing next week and wouldn't be able to do anything on that day. She looked horrified, then deeply concerned as I explained what it was and how it worked. I realised that going into hospital every 8 weeks for a transfusion is not normal to most people.

This woman patted me on the hand by way of offering support? condolences? sympathy? and stated that needles were horrible and she couldn't imagine anything worse than having to have one stuck in your arm for a whole day every two months. Then she actually shuddered at the thought.

I see it a bit differently.

Not too long ago I was about as sick as I’ve ever been. I remember telephoning my specialist every day in tears, begging him to admit me (which he did after five days). The surgery I'd had a year earlier had made things worse instead of better. I was in more pain than I ever though possible and could not go more than 20 minutes without needing a toilet including having to get up 6 or 7 times a night. 

After two days of observation, the doctors were all in agreement. Medication wouldn’t work. There were too many ulcers, fissures and strictures and they were too widespread to operate. The only solution: Colostomy bag.

I cried for a week. I pleaded. Anything, absolutely anything but THAT. 

Eventually after three weeks in hospital on high doses of steroids, daily injections, humiliating and excruciating enemas, a couple of strictoplasty procedures and a whole lot of begging on my behalf, they decided to try Infliximab. They weren’t really convinced it would work since none of the other similar class drugs had worked. I guess they just took pity on the poor sad creature who was desperately clutching at straws.

“There’s every reason to believe this will work.” I must have uttered that phrase 60 times a day to everyone who would listen, oblivious to the doubtful looks and words of caution about getting my hopes up. It was too late for that, they were already way the hell up there, it was going to work. It just had to. And work it did. Infliximab seemed to work from the first transfusion. Sometimes I wonder if will power and pure determination is enough to make medications do their thing.

Fast forward to today and I am probably as close to remission as I'll ever get. There's been no talk of colostomy bags or surgery. So to me, these transfusions are far from something horrible or a reminder that I have an illness. Infliximab saved my life and I am very lucky to have these transfusions every 8 weeks.

Every time I have the transfusion I’m reminded of where I was and how far I’ve come. I’m reminded of how bad things have been and that they can easily be that bad again and I’m thankful that, in this moment, I’m healthy. It reminds me that I am alive and well and that things are good and I come away from it feeling revitalised. 

Dentists.

By far the worst part of having Crohn's is the effect the disease, the medications and the bodies poor ability to absorb nutrients has on teeth. Mine are fucked, totally and irreversibly. I could brush them 16 times a day and drink a glass of fluoride for breakfast and it wouldn't make a lick of difference.

Today I went back to the dentist. I have this tooth which has had a root canal and a crown on top. It hurts, has done for more than two years now. I've seen more dentists that I can actually recall and they're all about as much use as an ashtray on a motorbike.

"My tooth hurts. It throbs. It hurts to touch it. Sometimes it's loose other times it feels like it swollen." I say to the dentist. The dentist considers this for a moment and then proceeds to pick up one of his implements of torture and bash the tooth repeatedly with it. 

"Does that hurt?" 

No, it feels like butterflies floating through a sunny meadow. What the fuck? Yes it fucking hurts.

Seriously, what is with dentists?

Tanty Time!

Today I chucked a tantrum at the dentist and walked out.

I should preface this by pointing out that I have a really high pain tolerance. I once hurt my wrist scaling a fence. I heard a crack and felt a harsh pain. I rubbed it better and went on my way not really giving it much more thought. A year later when getting x-rayed for some other reason (can't remember what) I was asked when I'd broken it. Huh? never. I was promptly shown the x-ray and the old fracture pointed out. I have a similar story with a bone in my foot. I'm sure Crohn's has helped my pain tolerance. Crohn's is a painful fucker, having a high tolerance is a survival mechanism!

But it's been a really shit week. Skin cancer involving painful biopsy, stitches and then burning with dry ice, sprained back muscle triggering sciatic nerve pain and involving instructions from the Chiro that I not lift anything (hello, I have a newborn!), sore foot which just aches all the time, tooth pain hurts on biting, sometimes it just throbs for the fun of it and to top it all off some Crohn's abdo pain. Seriously why does everything that goes wrong with me have to be physically painful???

So from the get-go I was not exactly fighting fit or in a great place. Just saying.

This morning the dermatologist convinced me to let her freeze the remaining skin cancer cells that hadn't been removed by the biopsy. I was obviously a little delirious from the collective pain. "You have a few choices, a chemotherapy cream with you rub on for a month or laser or cryotheraphy." Interesting selection Doc, lets burn my face with dry ice.

"Little sting" She whispered as she aimed the coffee machine type spout at me.

Little sting my arse. Seriously. I drove home, tears streaming down my face, wishing I'd chosen the cream. Sure it was going to leave a horrible sore on my cheek for a few weeks but it probably wouldn't have stung like this. It still hurts now, as I write this.

Next I had the dentist. I have a tooth which has been hurting for a long time. I first saw a dentist about it in April 2010. I've since seen five different dentists. They all say the same thing. The tooth is healthy. There's nothing obviously wrong. The tooth has had a root canal done on it many years ago and for some reason dentists refuse to accept that it could hurt. So I got all the usual questions: Are you sure it's that tooth? Not the one in front? Behind? Below? Yes. It's that tooth. How do you know? Er it friggen hurts when I push on it. Then to test the theory she decided to bash against it and the surrounding teeth with one of her dentist tools. I did mention it HURTS when I put pressure on it right? Satisfied that I was in pain but not convinced it could be coming from that particular tooth she pulled out the cold water spray.

Happy Place, Happy Place, go to your Happy Place!

From there she decided that she needed to do a scale and clean. The assistant comes over with the cold air sucker that she insisted on holding towards the back of my throat which was stimulating my gag reflex. When I told her she nodded and then put it right back where it was. The dentist then attacked my teeth and gums (which are sensitive at the best of times) with both the cold water spray dodad and the scaler thingy on high.

"Now if you feel any discomfort, just raise your hand" Raised my hand three times before she'd even managed to get round the back of my top teeth. She acknowledged the discomfort and said she lower the setting. It didn't help. Then she did something that actually made me cry out.  Now on any other day I would have grimaced and bore (bared?) it. But not today. Today I hit the pain ceiling. I reached my pain tolerance threshold.

"Stop." I said with a mouth full of dentistry tools. They both pulled their respective crap out of my mouth. "That really hurt." She gave her assistant a look that indicated she thought I was being difficult. I lost it. I pulled the bib off, wiped my mouth and pushed the tray of tools away. Why the hell am I doing this to myself? This is just a clean and scale. It's not vital procedure. It's just one of those bullshit things dentists like to charge you half a fortune for every 6 months. Fuck it.

"Forget this." I said. "Life's too short to suffer through unnecessary pain. Shove your clean. I'll stick with my toothbrush." They exchanged looks again and I got a lecture about dental hygiene. Then she offered to do it under anaesthesia... for $1,149!!! I pretty much walked out at that point. I must've looked a picture storming down the street for the first block, red faced, muttering to myself. No wonder people were moving out of my way.

I have had some pretty painful experiences during procedures in my life. I've never walked out on one before and for a scale and clean too, it's a bit pathetic. I'm smiling to myself at the ridiculousness of it all (although that may be the floaty effect of the pain meds kicking in). I'm sure the dentist has made a little note in my file: "Patient is a wimp with no tolerance for discomfort. Pretend you're booked out next time."

Gut-Dwellers

I couldn't sleep last night. I get this periodic insomnia from time to time, I'm pretty sure it's a side effect of one of the medications I'm on. I lay in bed listening to the array of noises coming from my stomach. If I place my hand flat across the lower right hand side I can actually feel movement inside. I have no choice but to come to the conclusion that miniature gut dwelling aliens have taken up residence in my intestines. I think they are having a party.

Sometimes the noises are really loud and pretty embarrassing. I don't really know what causes it. I mean I know it's just the food I've eaten being digested by my poor diseased innards, but I don't know why sometimes it's so load that people give me funny looks and other times I think that if I lifted my shirt you would probably see the gut-dwellers moving about under the skin and yet other times it's perfectly still and quiet. 

I don't remember having this problem during other flare-ups. Maybe I did, but I just don't remember it. I know in comparison to all the other problems, pain, diarreah, side-effects etc etc etc it's really a fairly minor thing... but when it happens and everyone in the room stops talking and looks at me for a moment before continuing with what they were doing, it doesn't feel as minor. 

:-(

Reducing pain from Crohn's Disease

NB: This is an article I wrote for Helium a few years back. It's a little bit generic and needs some fixing up, but it does cover the basics so I thought I'd re-post it here.

Reducing pain from Crohn's Disease

Crohn's disease is an inflammatory bowel disease that can occur in any part of the digestive tract from the mouth to the anus. While the cause is unknown it is thought to result when the immune system attacks the body causing inflammation and swelling. Pain results from various types of disease activity, from side effects of medications, from muscle strain, from complications, from surgery, from investigations and more. The most common types of pain are that from the swelling caused by the inflammation and obstructions resulting from scar tissue that builds around the intestine causing narrowing.

Crohn's disease pain can be anything from a mild discomfort from bloating to cramping, sharp stabbing pain, dull achy pain right up to an intense pain that comes in waves and includes nausea and vomiting.

Pain relief comes in many forms, there are those that provide instant relief such as medications and ice packs/heating pads and those that aim to reduce pain progressively over time such as guided imagery meditation and yoga.

Painkillers are probably the first thing to come to mind when thinking about pain relief, however not all painkillers will relieve the pain associated with crohn's disease. In fact some types of painkillers can actually increase the symptoms causing the pain. Likewise as the condition is chronic, dependence on painkillers can become a reality.

Narcotic pain relievers such as codeine or Vicodin can slow down the bowel. This can be helpful in cases where diarrhea is severe however they can mask symptoms of disease activity and can be addictive. Avoid non-steroidal anti-inflammatory drugs (NSAID) such as aspirin and ibuprofen, as they can exacerbate the already inflamed intestines. NSAID's can worsen the bleeding in the small bowel and can contribute to the development of ulcers. Always consult your doctor before taking any painkiller and consider the short and long term effects of using pain relief medications.

There are many natural therapies, which can aid in the reduction of pain, as Crohn's disease is a chronic condition it is well worth considering alternative methods of pain relief to drugs.

Cold packs/Heating pads are an effective and natural method of pain relief. Like medication they provide instant relief at the time of pain and are especially helpful for the cramping pain and muscle ache associated with crohn's. These can also be combined with aromatherapy.

While there is still much debate in the medical world about the impact of diet on Crohn's disease, anyone who has the disease will quickly tell you that diet makes all the difference in the world. One of the most efficient ways to manage the pain associated with Crohn's disease is to monitor and limit foods that can exacerbate symptoms.

There is no specific diet for Crohn's disease. Many sufferers believe that limiting specific types of foods such as starch or sugar have a positive effect on the symptoms. Others have found that low fat, low fibre diets decrease the likelihood of flare-ups. Low-residue diets are seen to be gentle on the bowel and are often used during acute phases of the illness.

Most people agree that avoiding things such as alcohol, caffeine and nicotine that stimulate the bowel and aggravate symptoms and increasing things such as yoghurt, and fish is a good start. A pain journal is a good way to monitor pain and correlate possible exacerbating foods.

Gentle massage has been used for centuries as a way to soothe muscles, relieve pain, and reduce inflammation and swelling. In many cases massage is as effective as medication for pain relief. Massage can be used at the time of pain for immediate relief or on a regular basis as part of a long-term management plan.

Progressive muscle relaxation is a method whereby each muscle is relaxed one by one and can aid in both the immediate reduction of muscle pain and spasms and more general pain reduction over time. It takes anywhere between 15 and 30 minutes to perform and is very effective.

Living with conditions such as IBD can lead to feelings of depression, anxiety and hopelessness. Meditation, the use of guided imagery and relaxation techniques such as breathing exercises have been a proven method of relieving pain. These techniques also aim in improving the emotional aspects of living with chronic pain. Likewise participating in gentle exercise such as Yoga or Thai Chi can be extremely beneficial.

Pain relief is a very individual thing, what works for some may not have any effect for others. It's important to try as many methods for reducing or eliminating pain as possible to develop the best overall management plan and ALWAYS discuss pain relief with your doctor.