Here's the first entry of 4, I think, about the November/December 2007 hospitalization/surgery. Underlined weights can be "hovered over" to get a conversion to pounds, at least in Firefox. I'll take a break, more will come soon.Thursday, 29 November 2007, 8:00pm to 9:00pmIf there's a holiday you can imagine me using as a swear word, it's Thanksgiving. You're expected to overeat, and that means guaranteed trouble with the Crohn's. The question is, how much trouble? Well, Thanksgiving is over... has been over for a week now (as of when I was writing this) - but why so long posting? There's only one good reason - the trouble showed up in spades! I ended up going into the hospital the next Monday...
The Wednesday before Thanksgiving, I ended up having the first warning - I was nauseous half the day, depsite being back up to 20mg prednisone... it seemed like I may never get off that drug. Thanksgiving, after the main menu, while I was playing cards with a family friend, I had a gas attack, and while I had a respite for the next few days, I ended up being woke up in the middle of the night (10 minutes before 3am) with a vomiting spell that was productive on and off until after 10am, and heaving until 4pm [I had called Doctor Shinoura at 9am, since I had an appointment with him at 11:30], and he said to get admitted instead. I got to the hospital at 11am (I was still having the heaves occasionally - no fun while I'm dealing with the paperwork!) The fact that I was having repeating spells in short order was getting to be too much, even if the individual spells weren't enough to put me in. (I was also having a cold that had hung on for almost the whole 2 weeks since I had last seen him to deal with. One major disadvantage of being on an immune-system suppressant drug like Imuran - infections are more severe and/or take longer to go away. It's been a good thing I've been generally healthy in the past in that regard.)
I was not even sore by Tuesday morning, and the cold finally disappeared Wednesday afternoon or so - but they're trying something new... they're giving me powdered medications (a second antibiotic and my Imuran - I take the usual IV antibiotic and steroids right now, as well as 100ml/hr bags of alternating D5LR and plain
LR.) - they think pills might get caught in my intestines, so I'm only drinking 6 ounces of water a day and the only thing I take is the two powders.
Tomorrow afternoon I'll have another central IV put in (what's that, 3 in 2 years? I'm getting used to it by now.) I'll have it for a week, and by that point, I'll know about surgery for sure. That'll improve my diet for a while. (I calculate I've been on 350-500 calories a day for the last 3 days, a central IV will let me do 1500 calories a day or more. I should be losing weight, but having 2 to 4 liters of water will slow that down! That's all right, I'll lose it once the operation happens, if it does. [I'm currently at
68.8 kg. - was at
67.15 kg. before the prednisone got upped again (my weight had been as high as
71.05 kg., and I'd like to be at
60 kg as an appropriate weight for my body style and height. Yes, I'd like to lose a few pounds, and I had started before this problem showed up.])
Yes, I may be having surgery soon. They're talking about it again. I'll know in a week or less. And I actually WANT it at the moment. Not that I'm in pain, but so that I don't have to keep bouncing back and forth into the hospital - this is admission number 3 this year, and while I had 4 longer ones last year, it is irritating not being able to HAVE a life!
The issue with scheduling surgery right now is something that has both good and bad points - We will probably be going back to the States soon. (95% chance that it'll actually happen, I think.) Dad's sent in his resignation (apparently his bosses are unhappy with him at the moment) and asked for February 2nd as his last day. Hopefully he'll be able to sell his vacation time back instead of making him take it... that way we'll have extra money for the trip back. The question is, where will we end up?
The reason that it creates a problem with surgery right now is that the surgery itself would not be until about December 7th or 10th or so - and THEN the 4 to 6 weeks that I couldn't do much would start. I'd be in the hospital for 2 of those weeks or so. I'd only be able to help with the last 2 weeks of the moving process. And that's if he gets the date he asked for. If he has to leave sooner, I'm going to HAVE to put off the surgery, because I won't have enough time to get healed up before the move and the flight across the Pacific that's involved with that! (I almost forgot about that flight until 10 minutes ago.) Flying is hard enough on me - the stress of a cross-Pacific flight is equivalent to a "yellow-to-red class"
* meal or two - I've blocked up (and therefore, had to deal with severe and repetitive vomiting) during the flight across before due to the stress. (I'll be bringing Elental packets to eat instead of the airline meal - and I'll be flying by myself, because my flight back will not be paid for, unlike my family's. I will have somebody at the other end to receive if I have problems, and if the surgery is too close, I'll be requesting wheelchair service this time.) If they set his last day any earlier than January 15th, I will NOT have the surgery here. I'll go and do it in the States instead.
At least I have my working (Dad's old) laptop to listen to music and play DVD's on while I'm here in the hospital. That'll help keep things less boring. That and I can TYPE my journal entries, even if I can't necessarily post them right now.
I'll be
NPO for at least another week. [Well, by the time I'm able to post this, I'll be off NPO and had a decision made on the surgery.]
* My internal classification for foods and meals goes like this: Green is like oatmeal and fish - foods that have anti-inflammatory properties. White is next - that's stuff that's ok, doesn't do much for or against. Then yellow (can't do it very often - sodas, for instance), red (don't dare do it, I'll throw it up), and black (check me in to the hospital now, because I will block up! Basically, I'm completely banned.) Nuts are red-to-black, for instance, because they're too hard to digest. Even including popcorn. Burnt and fried food is moved at least one class toward black. (I was highly suspicious about a split-pea soup that got burned at the bottom as helping kick in Wednesday's nausea spell.) Thin, non-spicy soups are white, so are scrambled eggs, chicken and turkey, and most pasta dishes. Examples of some yellow foods are red meats, gas-producing vegetables, and corn. Saturday, 1 December, 1:25We're going to do the surgery if they'll let us. I'm supposed to tell the doctor on Monday. Dad says to go for it because it looks like he'll get the day he asked for. Now if only I can get under the knife soon enough. ["Soon enough" as in this month, and preferably early in it - if they won't do it until after Christmas, I'll be checking with my family, as I'll need 4 weeks of healing time or it's a no-go, and at that, I'll be doing wheelchair travel on the airplanes.] I've called my best friend back in the States - he just moved - not very far, however, and his wife is expecting number 4 now. Taking a break from watching
Fantastic Four: Rise of the Silver Surfer at the moment. (Watched "
Cats and Dogs" earlier in the week - was pretty good. 7 out of 10 or so.)
They put in the central IV last evening, and hooked up the first
TPN bag at about 10:00 last night. It's running a little slow, it looks like, (it should have been done by now and it looks like it has 2-3 hours left on it) but it's running fine. Had to have an insulin shot an hour ago - they tested my blood sugar and it was 156 (when you're first on TPN here, they monitor the blood sugar and it's supposed to be between 80 and 150 - less and you get a glucose IV, more and an insulin shot is prepared.)
Good news, my weight is now
67.05 kg. - that's less than it was the last time I was weighed before Thanksgiving. 15 more pounds to go!
Some friends from church came by last night, too. Dad is supposed to be coming up today to give me a blessing sometime.
Sunday, 2 December, 10:15amWell, the central IV needed cleaned and now it's running fine... just a sec. (going to scale)
66.90 kg. now.
Monday, 3 December, 10:15amI'm off the IV antibiotic. Weight is
66.55 kg. now.
Monday, 3 December, 11:47amhad to switch iv to right hand. turns out fat IV is every day, not every 3. but it hurt when they started at at 11:15, so they switched it.
[side note: Now you see what happens when I had to type left-handed into notepad. Turned on "StickyKeys" later on.]
Tuesday, 4 December, 5:40pmMom should be coming anytime - she had Japanese kids today and yesterday, so she didn't come yesterday. I'm having her bring up a list of stuff. She had rented "
The Island" for me - that is a VERY good movie, and it makes you think - as well it should - about the ethics of human cloning and ESCR (which I am avidly against, by the way.) You might think with me having to deal with as much medical stuff as I do, I'd be for it, but it'd be "fruit of the poisoned tree" for me. It'd be like trying to earn money to pay off my debts by gambling. ("Fruit of the poisoned tree" is what the reason is called as to why you can't use stuff found in the course of an illegal search. It's the idea that something was wrong in the doing, and so everything involved is tainted and can't be used.) I'll have to check if
lifesitenews.com did an article on it when I get back to the house. At any rate, watch the commentary on that DVD - the director makes some of the same points.
Dad came and gave me that blessing Sunday afternoon - and I talked to Dr. Shinoura about getting that surgery scheduled. I haven't heard back from him yet... but I've told Mom I'm setting a few parameters. (It's my body, even if I take my family's advice on medical stuff)
If I get scheduled for December 17th or earlier, positively great! No issues. After that until December 31st, I'll take it, but I'll have to ask the airlines to provide wheelchairs at the transfer airports, (They do that if you ask, if I recall correctly) and also provide a note from my doctor for mixing my Elental (which could look quite terroristic if I don't warn them. It might be a good idea to have the flight attendants actually do the mixing and hand it back to me... I'll ask.)
Until January 7th, I'll delay my flight out a week and stay with some friends at this end. (I may not have to stay that long, it'll take a FEW days for my family to get packed and pulled out.)
Tuesday, 4 December, 8:00pmWell, at least Mizzou should still have a decent bowl! Just read the newspapers from Mom and found out that they lost. Grrr...
I'm going to nap out for a while... If I don't finish this, I'll do it tomorrow.
Wednesday, 5 December, 8:00 pmWell, I heard some hopeful news... Dr. Shinoura popped up an hour ago - he talked to the surgeon and it sounds like the surgery can be scheduled in a few weeks. I'm hoping that means the week of the 17th and not the week of the 24th - although I don't really expect that. Either way, I would not be HOME for Christmas (I'd have a week on TPN post-surgery, whatever date I did the surgery, and then they'd want to cautiously re-introduce drinking and eating normally again. Realize that I haven't eaten anything since about 10pm November 25th and drinking anything other than "pill water" [i.e. 1 cup of water a day or less] since 10am November 26th, and at that point, it'd be a month or more since I've done much of either.)
Yes, that long.
But since they put in a central IV, I can be on TPN for long periods of time, so I don't HAVE to eat or drink. (I have to ask, can't they keep central IV's in for months if they clean it every few days?) The way they do TPN here in this hospital is in 2 parts. (Until this visit, I thought it was all in one bag because they had to mix a bag that comes in 3 sections, and Mom told me that there were 3 parts in separate bags for her) The main part is a [for me, 820 calorie, 1000 ml bag that takes 10-12 hours to finish] bag of carbohydrates, animo acids, vitamins, water, and a little bit of oil that goes into the central IV in my subclavian vein (in my right shoulder). That bag runs continuously. The other part is 200ml (220 calories) of fat ["lipid"] solution that is pure white and goes into a normal IV in my arm for 2 hours a day and is problematic to get started to go in. It's the only reason I HAVE an arm IV at all, I get all my meds by mouth at the moment. [A 1 gram antibiotic powder - Bactrim, my doctor says it is, 40mg prednisone, and my usual doses of Imuran and Pentasa in the mornings and Pentasa in the afternoons and evenings is what I currently take.]
So I'm getting about a 1900 calorie a day diet, full nutrition, the equivalent of a 3/4 of a gallon of water a day, and it doesn't even taste at all, much less taste good! (IV fluid has to be set to be salty, or it'll pull salt out of the rest of the body into your blood, and you need some of those salts just to move... they're required for your nerves to work.)
9:00pmI'm watching
Bridge to Terabithia's extras now - since I have the case for it and not for
Pride and Prejudice, it'll take up space here until I send it home (and I have LIMITED space and my sister wants to see it again), so I'm watching it first. The commentary with the two kids in it is fun! I've got Windows Media Player's mini-screen running below this as I'm typing and headphones on.
Yes, I brought a bunch of movies and a few TV series DVD sets. I may have my family bring up my Lord of the Rings sets next week if the surgery is going to happen.
One of my mom's friends came up with her today and she said I looked the best I had in quite a while - I assume since before the July hospitalization (I've had 3 this year, July, September, and this one (November/December) - well, last year had 4! Being on TPN and bowel rest does improve things! I'd have to actually look back at my records, but I got to over 60 hospital days last year - I don't think I'm quite up to 30 yet for this year, although I'm pretty close.
My sister has a choir concert tomorrow night - I keep missing concerts while I'm in the hospital! She knows I like to hear her sing, but she understands. Mom was worse a few years back, if you recall. She also has another set of Japanese kids tomorrow, so next time she comes up will be Friday.
I've got a 1 GB thumb drive here with a few extra games and programs and OpenOffice on it. (The
PortableApps people did a good job, but OOo is slow to start, so I type this in Notepad - they can't help that much, OOo is just too big for a laptop that's old enough to only have USB 1.1 plugs... Once I get to the states, I may have to get a USB 2.0 PCMCIA card for this thing!)
Weighed myself this morning -
66.45 kg. (I had gained a bit between Monday and Tuesday morning, but lost it and then some.)
It's almost 10:00pm now, so I'm going to stop again. Have more to say, and will have yet more tomorrow, but gotta go to the bathroom! (You would, too, if you drank most of a gallon of water/liquid a day and that's all you did!) I go 12 times a day! (I'm supposed to keep track of how much I put out, so I KNOW. I write it down! It all comes out.)
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curtis's journal
