splodgenoodles: (Default)
When I saw my gastroenterologist on Thursday, we mused on where things were at compared to where they were only a year ago.

About a year ago, I was steeling myself for major surgery. A full colectomy, no less. In fact, when I met Newboi!, part of my enthusiasm was the poignant sense of impending loss, and wanting to have a last, crazy romance before it became extremely unlikely that I'd have another.

(Mind you, while we were wandering down the street with an unspoken agreement something was likely to happen between us within a couple of minutes in the back room of a secondhand bookshop, I told him what I was facing, and gave him the offer of leaving quickly. He replied that he wasn't going anywhere. Within a couple of minutes we were in the bookshop, pashing in the literary criticism section because it's always deserted, and having a great old time. He later told me such a thing as a colostomy would not have put him off and I shouldn't worry too much about its likely impact on my sex life.)

The point being, that surgery is entirely *not* indicated now.

~~~

Touchwood!

~~~

And all because of a last attempt to get me well, a long shot, using a very old drug (allopurinol) that's no longer under patent and therefore dirt cheap, that they've found improves the efficacy of one of my maintenance drugs (Imuran).

And there are new treatments for Crohn's Disease coming out. Both rediscoveries of old drugs and better combinations, like the one that's helped me, and the development of new ones.

~~~

This is good.
splodgenoodles: (Default)
Today is/was a crash day, which would have been best spent at home. But I had the gastro appointment, so 10B had to leave work and take me in with the wheelchair.

Yesterday was infusion day, and I kept moving after I got home, so crashing out today was no surprise really.

CFS crash, not Crohn's.

Home now and planning to stay put until Friday, when I have to see my eye doctor. Have decided to ask for carer for that, because I think I might need the chair again and it looks like the springtime work frenzy might be starting up.

Gastro pretty comfortable that current crop of symptoms are either Cipro or Crohn's or CFS, nothing else sinister going on. Review in 6 weeks, continue keeping fingers crossed that the reinduction of infliximab does something, if it's going to, we'll know by then.

Eye inflammation best treated as is. (Oh and apparently eye symptoms are resolved with surgery...that is, surgery on the effected parts of the intestine.) But they don't have the letter from my eye doctor yet.

On the plus side, we stopped for quite a nice bowl of pho on the way home, needing a quick, low fuss meal so 10B could get on with a rash of things that need doing as soon as we got home. Yay for a restaurant that had a wheelchair accessible eating area....bummer about the toilet, but yay for being able to go there at all.

~~~

And in case anyone's wondering, Abbot and Peacock can take their fucked up, flippant and offensive attitudes to people like me and shove them up their respective arses. Wheelchair accessibility is not guff(see above) and I'm not even going to touch what Peacock said. Although if I can pull myself together, I'll put the details in a post for all you good folk in far flung lands.
splodgenoodles: (Default)
Today is/was a crash day, which would have been best spent at home. But I had the gastro appointment, so 10B had to leave work and take me in with the wheelchair.

Yesterday was infusion day, and I kept moving after I got home, so crashing out today was no surprise really.

CFS crash, not Crohn's.

Home now and planning to stay put until Friday, when I have to see my eye doctor. Have decided to ask for carer for that, because I think I might need the chair again and it looks like the springtime work frenzy might be starting up.

Gastro pretty comfortable that current crop of symptoms are either Cipro or Crohn's or CFS, nothing else sinister going on. Review in 6 weeks, continue keeping fingers crossed that the reinduction of infliximab does something, if it's going to, we'll know by then.

Eye inflammation best treated as is. (Oh and apparently eye symptoms are resolved with surgery...that is, surgery on the effected parts of the intestine.) But they don't have the letter from my eye doctor yet.

On the plus side, we stopped for quite a nice bowl of pho on the way home, needing a quick, low fuss meal so 10B could get on with a rash of things that need doing as soon as we got home. Yay for a restaurant that had a wheelchair accessible eating area....bummer about the toilet, but yay for being able to go there at all.

~~~

And in case anyone's wondering, Abbot and Peacock can take their fucked up, flippant and offensive attitudes to people like me and shove them up their respective arses. Wheelchair accessibility is not guff(see above) and I'm not even going to touch what Peacock said. Although if I can pull myself together, I'll put the details in a post for all you good folk in far flung lands.
splodgenoodles: (Default)
The information that has filtered through to layman's websites about IBD:

About.com: Smoking, nicotine and IBD. Smokers with Crohn's Disease have worse disease outcomes, but Ulcerative Colitis is a disease of non-smokers and ex-smokers. Needless to say, smoking is still considered to have far worse outcomes than UC, so returning to smoking is not recommended.

Transdermal nicotine for mildly to moderative ulcerative colitis. A rondomised, double-blind, placebo controlled trial. (64 subjects. Found it was successful)



Preliminary Observations of Oral Nicotine Therapy for IBD.


Smoking and Nicotine in IBD - Good or Bad For Cytokines? Review Article.


And here's an intersting one: the authors of this study suggest the benefits or harms of nicotine on the course of IBD depends not on which disease you have, but where the inflammation is located. I mostly have colitis, inflammation of the colon, although the overall disease is Crohn's Disease (which can mean inflammation anywhere in the gastrointestinal tract), while ulcerative colitis only occurs in the colon (d'uh). So this would make a lot of sense.
Effect of Smoking on Inflammatory Bowel Disease: Is It Disease or Organ Specific?
splodgenoodles: (Default)
The information that has filtered through to layman's websites about IBD:

About.com: Smoking, nicotine and IBD. Smokers with Crohn's Disease have worse disease outcomes, but Ulcerative Colitis is a disease of non-smokers and ex-smokers. Needless to say, smoking is still considered to have far worse outcomes than UC, so returning to smoking is not recommended.

Transdermal nicotine for mildly to moderative ulcerative colitis. A rondomised, double-blind, placebo controlled trial. (64 subjects. Found it was successful)



Preliminary Observations of Oral Nicotine Therapy for IBD.


Smoking and Nicotine in IBD - Good or Bad For Cytokines? Review Article.


And here's an intersting one: the authors of this study suggest the benefits or harms of nicotine on the course of IBD depends not on which disease you have, but where the inflammation is located. I mostly have colitis, inflammation of the colon, although the overall disease is Crohn's Disease (which can mean inflammation anywhere in the gastrointestinal tract), while ulcerative colitis only occurs in the colon (d'uh). So this would make a lot of sense.
Effect of Smoking on Inflammatory Bowel Disease: Is It Disease or Organ Specific?
splodgenoodles: (Lady Penelope's car.)
We just walked around the block. I am so unfit. Hard for [livejournal.com profile] tenbears too, but only because he's not used to shambling. He seemed to have trouble knowing where to put his feet because his legs weren't moving far enough.

It kills me that going round the block is such a challenge for me. And that I'm secretly hoping that maybe someday soon I'll be able to do such a walk a couple of times a week with no payback. (Actually, what really kills me is that I assume that being well enough to do that would mean I'd have to get a job, pronto, and I don't feel quite ready...when really, being well enough to walk round the block three times a week hardly equates to being well enough to go to work. Logically speaking, I'm sure I've got a little bit more time before I need to buy an interview outfit. Like maybe, forever.)

~~~

And I've done another Scary Thing, go me. This was made easier when the process of getting it done became so damned fiddly that I wasn't so much anxious about the whole metathinginess of the activity as bored and pissed off and just wanting the fucking thing finished, FFS.

So now it's done.

~~~

Got an email today to tell me that I am not fructose or lactose intolerant, hurrah! Pardon me while I jump into a bath full of CAKE AND WHIPPED CREAM. (Cake containing wheat flour, you see, and wheat apparently being a problem in the fructose thing, believe it or not. Besides, jumping into a bath full of fruit and whipped cream just wouldn't have the same appeal, would it? Cake is much nicer, fruit is dull and unsexy).

~~~

But for those of you who wish I was dead right now (that'll be the folk currently munching on rice cakes and saying they're quite nice once you get used to them to anyone who'll listen), you'll be pleased to know that my cholesterol is still too high and I have to go on medication for it. My attempts to lower it through diet alone (ie-easing up on the cheese and fatty foods - in particular DUCK) only resulted in the levels of good cholesterol going down and the bad cholesterol going up slightly.

I take this as a sign that I should go back to what I was doing with the cheese and fatty foods - in particular DUCK. So if anyone wants me over the next week or so, look for me anywhere that does a nice yum cha.

~~~
splodgenoodles: (Lady Penelope's car.)
We just walked around the block. I am so unfit. Hard for [livejournal.com profile] tenbears too, but only because he's not used to shambling. He seemed to have trouble knowing where to put his feet because his legs weren't moving far enough.

It kills me that going round the block is such a challenge for me. And that I'm secretly hoping that maybe someday soon I'll be able to do such a walk a couple of times a week with no payback. (Actually, what really kills me is that I assume that being well enough to do that would mean I'd have to get a job, pronto, and I don't feel quite ready...when really, being well enough to walk round the block three times a week hardly equates to being well enough to go to work. Logically speaking, I'm sure I've got a little bit more time before I need to buy an interview outfit. Like maybe, forever.)

~~~

And I've done another Scary Thing, go me. This was made easier when the process of getting it done became so damned fiddly that I wasn't so much anxious about the whole metathinginess of the activity as bored and pissed off and just wanting the fucking thing finished, FFS.

So now it's done.

~~~

Got an email today to tell me that I am not fructose or lactose intolerant, hurrah! Pardon me while I jump into a bath full of CAKE AND WHIPPED CREAM. (Cake containing wheat flour, you see, and wheat apparently being a problem in the fructose thing, believe it or not. Besides, jumping into a bath full of fruit and whipped cream just wouldn't have the same appeal, would it? Cake is much nicer, fruit is dull and unsexy).

~~~

But for those of you who wish I was dead right now (that'll be the folk currently munching on rice cakes and saying they're quite nice once you get used to them to anyone who'll listen), you'll be pleased to know that my cholesterol is still too high and I have to go on medication for it. My attempts to lower it through diet alone (ie-easing up on the cheese and fatty foods - in particular DUCK) only resulted in the levels of good cholesterol going down and the bad cholesterol going up slightly.

I take this as a sign that I should go back to what I was doing with the cheese and fatty foods - in particular DUCK. So if anyone wants me over the next week or so, look for me anywhere that does a nice yum cha.

~~~
splodgenoodles: (Default)
1. The story so far:

I have Chronic Fatigue Syndrome; there are no drugs proven and approved for its treatment. I have Crohn's Disease, there are several options for Crohn's Disease management.

I have been crippled and seriously disabled by Chronic Fatigue Syndrome, while my Crohn's Disease has (mostly) been a hindrance only.

For many years I have been on prednisolone for Crohn's Disease; it has many bad side effects so I(and the relevant medical folk) have been trying very hard to find a better treatment.

A few months ago now, I went on infliximab, a drug available for the treatment of Crohn's Disease.

Since then, my fatigue has lessened considerably. It's been great, I've felt like *me* again.

My bowel symptoms remained much the same. But, as it happens, my fatigue was so markedly improved that the Crohn's people (the gastro unit of a large public hospital) were very happy that I should stay on infliximab. While I appear to have both Chronic Fatigue Syndrome and Crohn's Disease, fatigue is *also* a symptom of Crohn's Disease so the reduction in my level of fatigue meant I was, in their eyes, eligible for ongoing infliximab on those grounds alone. (After all, the measurements of fatigue don't actually distinguish between CFS-type fatigue and Crohn's type fatigue).

The next step was to come off the prednisolone.

This has not worked out. The prednisolone withdrawal has led to a significant and serious deterioration in bowel symptoms, beyond anything that can be managed without a big increase in prednisolone. And I might add, symptoms at a level that are very hard to live with.

It still seems to be very good for fatigue. In spite of the increase in Crohn's symptoms, my fatigue levels were still much reduced.

But given the Crohn's still cannot be managed without the large doses of prednisolone, infliximab is now considered a treatment failure.

I'm not eligible anymore.

~~~

2. I am not surprised.

I can't be surprised: inlfliximab doesn't work for everyone *and* it tends to wear off over time anyway. A few years ago I quite quickly developed resistance to its sister drug and stopped that too.

But I am disappointed. I just wish I'd had more time.

~~~

3. It's not necessarily an injustice. Not directly, anyway. Actually no, it is an injustice, a big one, but the cause lies elsewhere.

I do not think it's necessarily wrong that I'm not eligible: both drugs are powerful immune suppressants, as is the methotrexate that I also take.

I am bitter that research into CFS is so...non existent... that we don't know whether this is just one individual's experience or something that can help others. In fact, no one even knows that this treatment may have an effect on CFS because the details of my CFS are not relevant in the adminstration of the drug because I've been getting it for Crohn's because it's Crohn's that makes me eligible.

When fatigue comes up, even though it appears to operate independently of my Crohn's Disease(and always has, which is why successive gastroenterologists and CFS people have decided I have both conditions), and even though people with Crohn's-related fatigue describe different fatigue symptoms to CFS-fatigue symptoms, it is conflated with Crohn's Disease. And therefore lost to research.

~~~

4. Meanwhile, Splozza pondered what lay before her.

All of this explanation, which I hope is useful, is by way of explaining the direction our lives will be taking in the near future.

As I am no longer eligible for infliximab further improvement in my fatigue level seems unlikely. I may waft back to the level I was at before.

I'm not entirely sure, because some years ago now I was on a similar drug which had a similar (and entirely unexpected) effect on my CFS. I don't recall that I crashed when I came off it, but improvement certainly slowed down/stopped, so who knows? I have observed that I seem to waft back down before each infusion of infliximab so I confess I'm not wildly optimistic.

~~~

5. The hospital people are keen to recruit me into another clinical trial. Well, they basically see it as the most logical next step.

As I understand it, the deal with this trial is much the same as with the last trial I was in: for the first three months you get trial drug or placebo. Your other medications must remain stable. If they don't (because you get too sick) you are off the trial. After the three months, if you got the placebo, you get the drug for as long as you need/want it. If you got the active drug, I think you then get a spell off it, and then back on. Either way, once you're one they'll continue to give you the drug indefinitely and monitor you for both research purposes and for your own safety (as it is, after all, still only a research drug).


They say that places are filling up fast as it's proving a very popular trial. In other words, I guess, the various research centres around the world are clearly seeing good things happen to their patients (who are all folk like me who've run out of other options), so they are, not surprisingly, quite keen to get difficult patients enrolled.

This, of course, means that they are worried I'll miss out if we don't act fast. Me too.

~~~

6. But the last clinical trial was not a roaring success.

The uncertainty takes a huge toll. On you and on your loved ones.

And in many ways, I think it was harder for 10B than me. I've worked in allied health research so I'm not unfamiliar with how these things go, and as a subject in the last trial, I felt like I was very much a contributor to the the whole process, which I guess ameliorates the horrible sense of uncertainty somewhat. For a loved one, I think it's not so easy. I think it might be like watching your beloved disappear into a labyrinth.

For me it ended when I was admitted via Emergency in the middle of the night, needing large amounts of intravaneous fluids and prednisolone and the need for prednisolone made me ineligible to stay in the trial. That was over Easter last year.

For 10B it ended with a tearful phone call while he was on a much needed holiday, calling him home to be my carer again.

~~~

7. Choices?

A. Say no. Stay on ever increasing doses of prednisolone. Probably end up needing surgery which will mean a level of daily personal care that I might not be able to manage.

B. Other clinical trials? Maybe something else is in the pipeline? Could I enlist in something else in six months time and just continue with prednisolone for now? Give us more of a breather before we go through this hellride again? (But prednisolone is a hellride anyway...). Well. I've asked before and this is the only one they've mentioned. There probably are others in the pipeline, but how long before another comes along that might be appropriate (and the longer I am on higher and higher doses of prednisolone, the less likely I would be eligible, and if I were to have surgery I'd never be eligible again anyway...and as time goes by it just gets more and more likely that I would be ineligible for some other health reason.)

C. Off label drugs? Thalidomide, anyone? Expensive and sometimes very dodgy choices. Experimenting without the monitoring and care of a research team...? Or even if it's done with the help of this research team, they are still only ever case studies, n=1, inherently more tricky than something that's at the level of a clinical trial. Last resort, absolutely.
splodgenoodles: (Default)
1. The story so far:

I have Chronic Fatigue Syndrome; there are no drugs proven and approved for its treatment. I have Crohn's Disease, there are several options for Crohn's Disease management.

I have been crippled and seriously disabled by Chronic Fatigue Syndrome, while my Crohn's Disease has (mostly) been a hindrance only.

For many years I have been on prednisolone for Crohn's Disease; it has many bad side effects so I(and the relevant medical folk) have been trying very hard to find a better treatment.

A few months ago now, I went on infliximab, a drug available for the treatment of Crohn's Disease.

Since then, my fatigue has lessened considerably. It's been great, I've felt like *me* again.

My bowel symptoms remained much the same. But, as it happens, my fatigue was so markedly improved that the Crohn's people (the gastro unit of a large public hospital) were very happy that I should stay on infliximab. While I appear to have both Chronic Fatigue Syndrome and Crohn's Disease, fatigue is *also* a symptom of Crohn's Disease so the reduction in my level of fatigue meant I was, in their eyes, eligible for ongoing infliximab on those grounds alone. (After all, the measurements of fatigue don't actually distinguish between CFS-type fatigue and Crohn's type fatigue).

The next step was to come off the prednisolone.

This has not worked out. The prednisolone withdrawal has led to a significant and serious deterioration in bowel symptoms, beyond anything that can be managed without a big increase in prednisolone. And I might add, symptoms at a level that are very hard to live with.

It still seems to be very good for fatigue. In spite of the increase in Crohn's symptoms, my fatigue levels were still much reduced.

But given the Crohn's still cannot be managed without the large doses of prednisolone, infliximab is now considered a treatment failure.

I'm not eligible anymore.

~~~

2. I am not surprised.

I can't be surprised: inlfliximab doesn't work for everyone *and* it tends to wear off over time anyway. A few years ago I quite quickly developed resistance to its sister drug and stopped that too.

But I am disappointed. I just wish I'd had more time.

~~~

3. It's not necessarily an injustice. Not directly, anyway. Actually no, it is an injustice, a big one, but the cause lies elsewhere.

I do not think it's necessarily wrong that I'm not eligible: both drugs are powerful immune suppressants, as is the methotrexate that I also take.

I am bitter that research into CFS is so...non existent... that we don't know whether this is just one individual's experience or something that can help others. In fact, no one even knows that this treatment may have an effect on CFS because the details of my CFS are not relevant in the adminstration of the drug because I've been getting it for Crohn's because it's Crohn's that makes me eligible.

When fatigue comes up, even though it appears to operate independently of my Crohn's Disease(and always has, which is why successive gastroenterologists and CFS people have decided I have both conditions), and even though people with Crohn's-related fatigue describe different fatigue symptoms to CFS-fatigue symptoms, it is conflated with Crohn's Disease. And therefore lost to research.

~~~

4. Meanwhile, Splozza pondered what lay before her.

All of this explanation, which I hope is useful, is by way of explaining the direction our lives will be taking in the near future.

As I am no longer eligible for infliximab further improvement in my fatigue level seems unlikely. I may waft back to the level I was at before.

I'm not entirely sure, because some years ago now I was on a similar drug which had a similar (and entirely unexpected) effect on my CFS. I don't recall that I crashed when I came off it, but improvement certainly slowed down/stopped, so who knows? I have observed that I seem to waft back down before each infusion of infliximab so I confess I'm not wildly optimistic.

~~~

5. The hospital people are keen to recruit me into another clinical trial. Well, they basically see it as the most logical next step.

As I understand it, the deal with this trial is much the same as with the last trial I was in: for the first three months you get trial drug or placebo. Your other medications must remain stable. If they don't (because you get too sick) you are off the trial. After the three months, if you got the placebo, you get the drug for as long as you need/want it. If you got the active drug, I think you then get a spell off it, and then back on. Either way, once you're one they'll continue to give you the drug indefinitely and monitor you for both research purposes and for your own safety (as it is, after all, still only a research drug).


They say that places are filling up fast as it's proving a very popular trial. In other words, I guess, the various research centres around the world are clearly seeing good things happen to their patients (who are all folk like me who've run out of other options), so they are, not surprisingly, quite keen to get difficult patients enrolled.

This, of course, means that they are worried I'll miss out if we don't act fast. Me too.

~~~

6. But the last clinical trial was not a roaring success.

The uncertainty takes a huge toll. On you and on your loved ones.

And in many ways, I think it was harder for 10B than me. I've worked in allied health research so I'm not unfamiliar with how these things go, and as a subject in the last trial, I felt like I was very much a contributor to the the whole process, which I guess ameliorates the horrible sense of uncertainty somewhat. For a loved one, I think it's not so easy. I think it might be like watching your beloved disappear into a labyrinth.

For me it ended when I was admitted via Emergency in the middle of the night, needing large amounts of intravaneous fluids and prednisolone and the need for prednisolone made me ineligible to stay in the trial. That was over Easter last year.

For 10B it ended with a tearful phone call while he was on a much needed holiday, calling him home to be my carer again.

~~~

7. Choices?

A. Say no. Stay on ever increasing doses of prednisolone. Probably end up needing surgery which will mean a level of daily personal care that I might not be able to manage.

B. Other clinical trials? Maybe something else is in the pipeline? Could I enlist in something else in six months time and just continue with prednisolone for now? Give us more of a breather before we go through this hellride again? (But prednisolone is a hellride anyway...). Well. I've asked before and this is the only one they've mentioned. There probably are others in the pipeline, but how long before another comes along that might be appropriate (and the longer I am on higher and higher doses of prednisolone, the less likely I would be eligible, and if I were to have surgery I'd never be eligible again anyway...and as time goes by it just gets more and more likely that I would be ineligible for some other health reason.)

C. Off label drugs? Thalidomide, anyone? Expensive and sometimes very dodgy choices. Experimenting without the monitoring and care of a research team...? Or even if it's done with the help of this research team, they are still only ever case studies, n=1, inherently more tricky than something that's at the level of a clinical trial. Last resort, absolutely.
splodgenoodles: (Default)
I am feeling so incredibly twitchy and pissed off. Box Hill still have not rung me about starting infliximab. I know it's not the end of the world, what's a few days here and there..?

However:

-I am afraid the application has been rejected and want reassurance that it's not (I've rung to check but have had no return call);
-I guess I figured that by now it would be happenning - and that I would be feeling better even if only for a while. It's like waiting and waiting for a taxi when you're standing outside on a hot and windy day;
-and I'm anxious about whether or not it will work, and whether or not I'll have bad side effects, to the point now that I just want it to happen rather than live with the uncertainty.

Really, in the whole scheme of things I have little to complain about here, I know I'm being irrational. All I have to do is just keep on surviving as I always do, and direct my thoughts to things I can control. But it's easier said than done.
splodgenoodles: (Default)
I am feeling so incredibly twitchy and pissed off. Box Hill still have not rung me about starting infliximab. I know it's not the end of the world, what's a few days here and there..?

However:

-I am afraid the application has been rejected and want reassurance that it's not (I've rung to check but have had no return call);
-I guess I figured that by now it would be happenning - and that I would be feeling better even if only for a while. It's like waiting and waiting for a taxi when you're standing outside on a hot and windy day;
-and I'm anxious about whether or not it will work, and whether or not I'll have bad side effects, to the point now that I just want it to happen rather than live with the uncertainty.

Really, in the whole scheme of things I have little to complain about here, I know I'm being irrational. All I have to do is just keep on surviving as I always do, and direct my thoughts to things I can control. But it's easier said than done.
splodgenoodles: (Default)
A strange sort of life I lead.

I am back to trying to pace and switch, and trying to work out the best timetable for resting.

...famous last words...

~~~

I've been feeling as though I'm finally managing to hold a lot of things at arm's length, for at least long enough to get a good's night sleep. Not last night though, I had a sudden attack of feelings and concern. Even though there's nothing that can be done or acted on, especially not at 2AM.

I envy people who do not know hypervigilance.

~~~

I am waking up unsure of what to do with my days and old routines aren't working well anymore. It seems to take a few hours before I am even clear headed enough to know whether I'm having a good day or not. It's probably a good time to try using CPAP again, and/or consider a second trial of Modafanil (the wakefulness drug) although there's quite a bit of medication tweaking going on at the moment with the Crohn's Disease drugs, so perhaps not quite just yet.

Decision making consumes an awful lot of one's quota of beans for the day, so I do need to hit on some basic routine that I can generally expect to manage without fuss, but that is still fulfilling enough that I don't feel empty and bored.

Too muzzy-headed for communication with others. Getting breakfast is okay. Washing is too challenging both physically and in terms of sensory overload, although soaking in the bath might be okay. Dunno really, I guess i'm just going to have to poke at things for a while and see what happens.

~~~

On a cheerful note (not that the other stuff is depressing - I actually feel it's neutral - just news), this business of the Crohn's behaving itself at long last is good fun. I've been eating fruit like it's going out of fashion. And all of a sudden I have found I like apples. And carrots! And I bought some muesli on Friday, two kinds. Plus avocadoes, bananas, grapes, cherries, tomatoes and a cantelope.

Unfortunately I'm probably eating more calories than I'm burning, but I was doing that while on the low-residue diet anyway. At least now I'm getting vitamins and minerals as well.

Oh, and I bought asparagus on Friday as well. My beloved asparagus patch is pretty much at the end of its season but I'm still hankering for it, so I gritted my teeth and bought non-home grown asparagus. But double bonus, I just went outside and found several spears among the ferns that I've allowed to grow that I figured I could safely pick. Heh. So now I have *lots* of asparagus.
splodgenoodles: (Default)
A strange sort of life I lead.

I am back to trying to pace and switch, and trying to work out the best timetable for resting.

...famous last words...

~~~

I've been feeling as though I'm finally managing to hold a lot of things at arm's length, for at least long enough to get a good's night sleep. Not last night though, I had a sudden attack of feelings and concern. Even though there's nothing that can be done or acted on, especially not at 2AM.

I envy people who do not know hypervigilance.

~~~

I am waking up unsure of what to do with my days and old routines aren't working well anymore. It seems to take a few hours before I am even clear headed enough to know whether I'm having a good day or not. It's probably a good time to try using CPAP again, and/or consider a second trial of Modafanil (the wakefulness drug) although there's quite a bit of medication tweaking going on at the moment with the Crohn's Disease drugs, so perhaps not quite just yet.

Decision making consumes an awful lot of one's quota of beans for the day, so I do need to hit on some basic routine that I can generally expect to manage without fuss, but that is still fulfilling enough that I don't feel empty and bored.

Too muzzy-headed for communication with others. Getting breakfast is okay. Washing is too challenging both physically and in terms of sensory overload, although soaking in the bath might be okay. Dunno really, I guess i'm just going to have to poke at things for a while and see what happens.

~~~

On a cheerful note (not that the other stuff is depressing - I actually feel it's neutral - just news), this business of the Crohn's behaving itself at long last is good fun. I've been eating fruit like it's going out of fashion. And all of a sudden I have found I like apples. And carrots! And I bought some muesli on Friday, two kinds. Plus avocadoes, bananas, grapes, cherries, tomatoes and a cantelope.

Unfortunately I'm probably eating more calories than I'm burning, but I was doing that while on the low-residue diet anyway. At least now I'm getting vitamins and minerals as well.

Oh, and I bought asparagus on Friday as well. My beloved asparagus patch is pretty much at the end of its season but I'm still hankering for it, so I gritted my teeth and bought non-home grown asparagus. But double bonus, I just went outside and found several spears among the ferns that I've allowed to grow that I figured I could safely pick. Heh. So now I have *lots* of asparagus.
splodgenoodles: (Default)
I'm after some academic articles. Can someone please help me with these two?

1. Ann Med. 2001 Nov;33(8):516-25.
"Thalidomide treatment for refractory Crohn's disease: a review of the history, pharmacological mechanisms and clinical literature."
Ginsburg PM, Dassopoulos T, Ehrenpreis ED.

2. Gastroenterology. 1999 Dec;117(6):1278-87.
"An open-label pilot study of low-dose thalidomide in chronically active, steroid-dependent Crohn's disease."
Vasiliauskas EA, Kam LY, Abreu-Martin MT, Hassard PV, Papadakis KA, Yang H, Zeldis JB, Targan SR.


There may be more, but I'm buggered.
splodgenoodles: (Default)
I'm after some academic articles. Can someone please help me with these two?

1. Ann Med. 2001 Nov;33(8):516-25.
"Thalidomide treatment for refractory Crohn's disease: a review of the history, pharmacological mechanisms and clinical literature."
Ginsburg PM, Dassopoulos T, Ehrenpreis ED.

2. Gastroenterology. 1999 Dec;117(6):1278-87.
"An open-label pilot study of low-dose thalidomide in chronically active, steroid-dependent Crohn's disease."
Vasiliauskas EA, Kam LY, Abreu-Martin MT, Hassard PV, Papadakis KA, Yang H, Zeldis JB, Targan SR.


There may be more, but I'm buggered.
splodgenoodles: (Default)
I've calmed down somewhat now. Two sleepless nights will do that to a girl.

(It's okay, I'm premenstrual and have finally accepted that two sleepless nights is part of the deal).

Basically, all that's really happenned is that a Proper Doctor(TM) has written down an opinion (without prompting) that accords quite strongly with one of the possibilities that I've been entertaining anyway.

But it still remains a theory.

The only way we can find out if it's true is to get me off prednisolone, which is where it gets complicated.

I'm probably going to be doing a few posts about the ins and outs of this.

But here's the guts of it for those who are wondering what the fuck I'm talking about and actually want to know (and feel free to ask if you're confused):

blood and guts and fangs in my teeth )

In unrelated news, Fuzzychops The Outside Cat(TM) is having a bastard of a day. We've got proper winty weather happening here at the moment and I would let her stay on her little heated cat-mat in the laundry all day but well, we're having a clothing crisis at the moment and so we really need the laundry for you know, doing the laundry. So she's outside feeling sorry for herself.

We can't have her in there with the tumble dryer going - it freaks her right out. And worse, if we left her in there with the tumble dryer going for too long, it would stop freaking her right out. She'd get used to it. That would be even worse because then we'd never get her outside ever again except when she felt like going out.

It's kind of important to effective long term cat-wrangling that she remains convinced that the tumble dryer will eat her.
splodgenoodles: (Default)
I've calmed down somewhat now. Two sleepless nights will do that to a girl.

(It's okay, I'm premenstrual and have finally accepted that two sleepless nights is part of the deal).

Basically, all that's really happenned is that a Proper Doctor(TM) has written down an opinion (without prompting) that accords quite strongly with one of the possibilities that I've been entertaining anyway.

But it still remains a theory.

The only way we can find out if it's true is to get me off prednisolone, which is where it gets complicated.

I'm probably going to be doing a few posts about the ins and outs of this.

But here's the guts of it for those who are wondering what the fuck I'm talking about and actually want to know (and feel free to ask if you're confused):

blood and guts and fangs in my teeth )

In unrelated news, Fuzzychops The Outside Cat(TM) is having a bastard of a day. We've got proper winty weather happening here at the moment and I would let her stay on her little heated cat-mat in the laundry all day but well, we're having a clothing crisis at the moment and so we really need the laundry for you know, doing the laundry. So she's outside feeling sorry for herself.

We can't have her in there with the tumble dryer going - it freaks her right out. And worse, if we left her in there with the tumble dryer going for too long, it would stop freaking her right out. She'd get used to it. That would be even worse because then we'd never get her outside ever again except when she felt like going out.

It's kind of important to effective long term cat-wrangling that she remains convinced that the tumble dryer will eat her.

Stuff

Aug. 9th, 2008 06:36 pm
splodgenoodles: (Lacey's)
10 year anniversay of CFS coming up. Emotionally kind of heavy.

And now a highly respected endocrinologist disputes that diagnosis.

I feel her main symptoms are directly related to her prednisolone use and that she essentially has iatrogenic Cushing's syndrome.

If he's right, the implications are enormous. If he is not the implications are also enormous.

And hope - I'm scared of hope. Hope becomes dangerous when it fails you too often. I don't want to get hurt anymore.

And I'm scared of doing anything rash. Which I could do. When you see a potential way out of your situation, you can easily believe just because you want it so much.

I got the letter from him last night and I can't quite explain the emotional impact of seeing all this written down. Labels are powerful things. And this raised so many questions. And could change so much.

~~~

Last night Mum-in-Law came by and made a point of sitting me down and telling me not to protect her. That she's always kept her head in the sand and that she needs to stop and so I need to stop protecting her from the reality of my situation regarding the Crohn's Disease and what might lie ahead. She pointed out she's family, and she will cope and I'm not to worry about how she feels, she'll manage and she'll deal with her own issues.

God she's a trooper. As it happens, given I know how squeamish she is, I've been amazed at how well she *has* coped.

Family!

~~~

But now I have to fight. I have to push hard to get a chance to explore all options, to not simply go down the same road that others go. Because I don't want to go there, and I *am* willing to fight to avoid it. I *am* willing to try other options first and I need to find the people who will support me and help me in that. I've just got to find them, prove that I'm willing and get them on side, whether that's because they feel sorry for me, want to rescue me or are simply wanting to follow up on some research possibility that they like. Doesn't matter why. Shake them by the lapels and say 'take my body it's yours, do what you want'.

OMFG so much work to do. Soooo much.

Stuff

Aug. 9th, 2008 06:36 pm
splodgenoodles: (Lacey's)
10 year anniversay of CFS coming up. Emotionally kind of heavy.

And now a highly respected endocrinologist disputes that diagnosis.

I feel her main symptoms are directly related to her prednisolone use and that she essentially has iatrogenic Cushing's syndrome.

If he's right, the implications are enormous. If he is not the implications are also enormous.

And hope - I'm scared of hope. Hope becomes dangerous when it fails you too often. I don't want to get hurt anymore.

And I'm scared of doing anything rash. Which I could do. When you see a potential way out of your situation, you can easily believe just because you want it so much.

I got the letter from him last night and I can't quite explain the emotional impact of seeing all this written down. Labels are powerful things. And this raised so many questions. And could change so much.

~~~

Last night Mum-in-Law came by and made a point of sitting me down and telling me not to protect her. That she's always kept her head in the sand and that she needs to stop and so I need to stop protecting her from the reality of my situation regarding the Crohn's Disease and what might lie ahead. She pointed out she's family, and she will cope and I'm not to worry about how she feels, she'll manage and she'll deal with her own issues.

God she's a trooper. As it happens, given I know how squeamish she is, I've been amazed at how well she *has* coped.

Family!

~~~

But now I have to fight. I have to push hard to get a chance to explore all options, to not simply go down the same road that others go. Because I don't want to go there, and I *am* willing to fight to avoid it. I *am* willing to try other options first and I need to find the people who will support me and help me in that. I've just got to find them, prove that I'm willing and get them on side, whether that's because they feel sorry for me, want to rescue me or are simply wanting to follow up on some research possibility that they like. Doesn't matter why. Shake them by the lapels and say 'take my body it's yours, do what you want'.

OMFG so much work to do. Soooo much.
splodgenoodles: (Lady Penelope's car.)
(For those of you who aren't from round these parts: drugs on the Pharmaceutical Benefits Scheme are subsidised for certain medical conditions, which takes the price down from whatever the company charges to about $31ish for people on normal incomes and about a third of that if you're on a health care card. The PBAC is the Pharmaceutical Benefits Advisory Committee. As you can imagine, getting drugs listed for any given medical condition is a pretty big thing for all stakeholders.)

From both [livejournal.com profile] shehasathree and the Crohnology blog,
Humira is going to be listed on the PBS.

From The Age:
New drug on PBS for Crohn's disease


July 24, 2008 - 7:28PM

About 3,000 Crohn's disease sufferers will be able to access a subsidised drug to treat the condition from next week.

Crohn's disease is an inflammatory disorder of the gastrointestinal tract, which mostly affects people aged 15 to 35.

Sufferers of Crohn's disease can experience chronic abdominal pain, diarrhoea and bowel movements containing blood.

Symptoms include fever, anorexia, fatigue and joint pain.

Federal Health Minister Nicola Roxon said the drug adalimumab, sold under the brand name Humira, would be available to Crohn's sufferers under the Pharmaceutical Benefits Scheme from August 1.

She said patients will be able to self-administer by an injection under the skin rather than being admitted as a day patient to receive an infusion.

"At a time when people's household budgets are really under pressure, we will keep on doing everything we can to make sure that people who are suffering can afford the medicines they need," Ms Roxon said.

"This announcement will help thousands of Australians who battle with what can be a debilitating disease."

Gastroenterologist at the Royal Prince Alfred Hospital in Sydney, Warwick Selby, said Crohn's was a debilitating disease striking young people in the prime of their lives.

"Humira provides another treatment option for patients suffering from moderate to severe Crohn's disease who have not responded to conventional therapies," he said.

About 3,200 sufferers will be able to access the drug under the PBS in the first year, saving more than an estimated $20,000 each a year.

The extended listing of adalimumab will cost taxpayers $131.8 million between 2008-09 and 2011-12.

© 2008 AAP


I must say I find it vastly amusing that the author says that listing will mean sufferers are "saving more than an estimated $20,000 each a year". Bollocks. They aren't saving us money because most people can't afford the drug if it's not subsidised, end of story. Without the PBS, drugs like this just don't exist for very many people.

But I am very heartened by the news. Humira didn't seem to have much to offer me (although my gastro and I agreed we would try it again if it did get listed), but it will be a godsend for many people.

Also, it does look as though the PBAC is taking seriously the need to provide the range of new treatments that are being proven useful in managing Crohn's Disease. There are two more drugs in the same class (natalizumab/Tysabri and certolizumab pegol/Cimzia) that have recently been approved in the US for Crohn's which may prove useful to me - the listing of Humira leaves me optimistic that the PBAC will seriously consider these ones soon as well. And maybe they'll work for me.

~~~

Even though my experience on Humira wasn't a roaring success, there were some unexpected benefits, like increased overall energy. And there was a definite improvement in Crohn's-specific symptoms for a short period of time. So I'd like to try it again just to see what happens.

Unfortunately, research and after-release data shows that Humira can lose effectiveness over time for many people (and one of the selling points of the newer drugs that aren't approved here yet is that so far, they appear to remain effective for much longer).

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