I am both fortunate and unfortunate in the challenges my body has thrown my way. On the one hand, I have confirmed Crohn’s Disease of the small bowel and (semi-diagnosed) Ehlers-Danlos syndrome (hypermobility type). I have Seasonal Affective Disorder (I get miserably lethargic and non-functional in winter). I’ve had endometriosis.
These are not good things.
But on the other hand:
- I am cashed up enough that we can afford tools to mitigate my S.A.D. (sun-lamp, sunrise alarm clock, redecorating to make house look bigger and brighter and so that more light reflects off surfaces, also going on holiday to warmer sunnier places in winter).
- My endometriosis case fell into the two-thirds of cases that actually are resolved with a single laparoscopy. I no longer have symptoms.
- My EDS is a moderate presentation (partly due to the fact that I was a sedentary kiddo and thus did not accumulate long-term connective tissue damage like a more active kid might have done. This is a feedback loop – moving was awkward and painful, which is why I was a sedentary kiddo…) so I can do a lot of things that more severe sufferers cannot. Even more, we’re financially secure enough that I can afford to work casual/part-time so that I have more time for the extra exercise and sleep required to manage EDS. And we can afford physiotherapy, clinical pilates, gym memberships, etc. without worry.
- My Crohn’s Disease is solidly in the “mild” category. It’s only in my small intestine. It’s scattered. There’s little to no scarring, only limited narrowing, and no real risk of obstruction. I don’t have chronic diarrhoea. I don’t need a stoma. I can still absorb enough nutrients (not efficiently, but I can do it). Mild Crohn’s is still no picnic: I am in pain all the time when I’m not taking something to manage that pain, I have secondary carbohydrate malabsorption due to my inefficient gut, sometimes I feel nauseated after eating (less so when I’m on keto), and currently I’m dealing with monstrous fatigue issues possibly due to B12 absorption problems, but otherwise, I’m dandy.
Number four is the topic of today’s post.
Since my diagnosis, I’ve been on the following drugs to treat the Crohn’s (I’m not listing pain relief here. That’s a whole different post):
- Budesonide EC/Entocort. This is a corticosteroid, much like prednisone, but with many fewer side effects because it is largely processed in the liver. It’s distributed through the lower small bowel, terminal ileum, and upper colon. These are the most common sites for Crohn’s to affect, and some of my inflammation sites are in that area (all in the ileum though, not the colon). I’ve been on the maximum dose (9mg/day) for over a year. Surgeon Sam thinks it’s not doing much, and he doesn’t want me on corticosteroids for no reason, so we’ve tapered that to 6mg in the last month. My pain seems to be worse though, so I will report back on that front.
- Imuran/azathioprine. This is an immunosuppressant, also used to treat leukaemia. I took it for ten days and developed facial redness and scaly skin, which apparently means it’s a sign you have an allergy or intolerance and you can’t safely take it. Well, bugger.
- 6-MP/mercaptopurine. This is the pre-metabolised version of Imuran. It’s associated with more side effects, but can sometimes be effective when Imuran doesn’t work or isn’t tolerated (the reverse is also true). I took this for about a month or so, and then it turned out I was producing nearly four times the level of toxic secondary metabolites that humans can tolerate. So I had to stop that one.
- This is another immunosuppressant, but it operates along a different pathway to the other two. I had monster nausea the first time I took it, which is not uncommon, but as soon as I started smashing the supplementary folate, it went away. However, when I was away at sea for a month, I developed extensive and bizarre bruising. Now, I’m uncoordinated, and I was on a boat, and I’m also on corticosteroids (see (1) above) which can weaken capillaries a bit. EDS sufferers also bruise very easily due to our wacky collagen. Given these profoundly confounding factors, it’s not entirely certain that the methotrexate (or mtx to the in-crowd) was responsible for the bruising, but I was away at sea, so – via email – my surgeon advised me to stop taking it.
Right now, I’m taking a tapered dose of Budesonide and that’s it.
The Budesonide is not working. It barely takes the edge off. So, if I’ve tried Azathioprine, 6-MP and methotrexate, and none of those seem to be safe for me, what’s left?
Well, there are a few other treatments. Very powerful, scary, effective treatments.
It’s just that they’re also incredibly expensive. We are talking ludicrous numbers. Now, I live in a country with very good socialised, single-payer healthcare, and I’m used to benefitting from that. However, the budget isn’t endless, and Medicare (the Australian version) won’t cover these newer treatments unless you are very sick. Basically, my Crohn’s has to be much, much worse before I’m able to be treated with these medications.
It’s good that I’m not sick enough for Remicade. I don’t want to be that sick.
But I also don’t want to be untreated. Crohn’s Disease is a progressive condition. Even if you’re asymptomatic, it can progress and do a fair bit of damage to your digestive system (which is why “controlling it with diet” is a bit suss unless you’re also being regularly tested and checked out for inflammation). If I leave it long enough, I will get sicker. The inflammatory patches will spread. They will get more severe. The pain will get worse. I will develop other symptoms and side effects I currently don’t have to deal with (everything from internal fistulas and abscesses to painful skin rashes to gall bladder issues and even to bowel obstructions).
And then… then I’ll get treated.
At the moment, we’re trying to avoid that outcome. I’m scheduled for a ketamine infusion in ten days to treat my chronic pain (visceral hyperalgesia). I’ll be in hospital for a week. If that goes well (or even if it doesn’t), I’ll go and see Surgeon Sam afterwards, and we’re going to try putting me back on the methotrexate – only this time, we’ll be monitoring my liver tests weekly. This way, we should be able to work out whether the bruising was caused by the mtx or not. If not: sweet. I can stay on the mtx.
Hopefully, I can be on a medication long enough to find out if it’s actually doing anything, because there’s the possibility that mtx might be safe for me to take, but might also not effectively treat the Crohn’s.
One sad undertone to all this is that I really would like to have a kid at some point, and Budesonide is a teratogen and methotrexate is an abortifacient. So my only real hope of doing that is to get into remission and go off the meds. It’s possible. My Crohn’s is mild, and remission is definitely achievable.
Right now it’s a frustratingly distant possibility. I’m 36. I haven’t got forever.