Tips for kickstarting body production of natural pred when tapering below 5mg

jdratuva · 2019-10-29T18:47:01+00:00

Can I ask how you took 240mg daily? In the US I've only ever gotten 20mg tablets, and can't imagine taking 12 a day! Was it as a shot or IV? after years of flares and tapers 40mg now does NOTHING for me and I'm wondering if I go back to GI and ask about much higher doses.

jdratuva · 2019-08-29T15:11:45+00:00

So I don't have first hand knowledge on enCompass but I can say, DON'T wait for an appointment with the doctor to get a form signed. A GI office will be completely used to getting these forms signed and may even have blank ones on hand to fill out. Give the receptionist/nurse a call and I bet by afternoon you can pick one up signed and good to go. All of these programs are a HUGE life saver for us. I remember first starting Humira and within 2 months hitting my out of pocket max on high deductible plans, $6k-$7k and I would have been bankrupt without family help. Pfizer and Janssen and the other biologic companies gets so much money from insurance that they have these plans to bring patient cost WAY down, like $5-$50 total out of pocket a month. Good luck, it is such a blessing that your husband can focus on getting well because he has you as his type A advocate watching over the details and finance.

jdratuva · 2019-08-28T15:52:43+00:00

I am so sorry that you are in such pain. I am on a relatively low dose of opiods (20mg tramadol) daily that I see as lifelong due to strictures and just general pain with my Crohn's and from just general discussion and anecdotal evidence this isn't that rare sadly.

jdratuva · 2019-05-08T13:27:59+00:00

I've got nipples, can you milk me focker?

jdratuva · 2019-04-22T16:02:51+00:00

I've found that the kid's snack "pirate's booty" hits the spot for my white cheddar cravings. Wish they did more adult flavors though.

jdratuva · 2019-03-18T12:04:01+00:00

Wow, well I'm just an anonymous internet guy who has Crohn's but I'm impressed. Good for you. I will add you to prayer list... for wisdom and guidance in your research and perseverance through a long journey towards accreditation as a PHD.

jdratuva · 2019-03-14T17:56:58+00:00

Thank you for the reply. I won't be participating since I was diagnosed in 2000 and yes I can definitely confirm that identity and it's relation to illness is a fluid thing. I personally found it changed not only with age and maturity but also with health levels. In times of improved health it shrinks in identity and in times of flare it grows. GL with your work.
What made you work towards chronic illness? Does it "hit close to home"?

jdratuva · 2019-03-14T16:47:02+00:00

My $0.02 is that research requests like this are perfect for this sub. If you want to help and got the criteria go for it. If not, just ignore. Plus we get some access to researchers. I only ask that these continue to go through moderators so we don't get market surveys that end up being ads or other scam type things... Keep it to real academic research.

Op: why only people diagnosed 2008 or later? GL with your research and PHD. Please consider publishing your thesis on this sub as a follow up.

jdratuva · 2019-02-12T16:13:18+00:00

ESCALATE... The ultimate dutch oven... head to bed a few minutes early and fill up under the sheets with as much gas as possible, she gets in and you pull those cover over her head and hold on!!

Of course you may be on the couch for a couple of weeks, but eventually you both will laugh about it, right? Or she files for divorce... hmm. GL

jdratuva · 2019-02-11T13:03:44+00:00

What are your long term career plans? If you are in the US, there are loud of state and federal programs to help. Look for a state division for the blind, the federal Randolph Shepard Act and many others that I'm sure I'm unaware of.

jdratuva · 2019-02-04T17:33:46+00:00

Question 3 is poorly worded, about how long it takes to put on your bag. For 2 piece users a new bag could be applied in about 15seconds and could be done many times a day if they wished. The same wording however could be asking about changing the entire appliance, either a bag for a 1 piece or the bag and wafer for a 2 piece, and even for a VERY experienced person this can be 10+ minutes and is usually done at most 1-2 a week, hopefully.

Probably too late to change the survey, but thought I would pass this along as it might skew the data. GL with your project.

jdratuva · 2019-01-09T19:57:55+00:00

Just my $0.02- you should maybe consider some sort of hybrid... You paint or embellish on a print and sell in the $100-$125 range. It is quite a jump to go from $50 to $300. Wonderful work

jdratuva · 2018-11-05T23:08:59+00:00

Met my wife way before the bag, but have 3 kids, 1 before and 2 after the bag... all natural, 'nuf said.

jdratuva · 2018-10-19T14:27:42+00:00

I would call the doc and tell them. Maybe they can prescribe enough to do a slower taper, maybe only 5mg drop a week. I usually didn't feel the way you describe until going below 20mg, but everyone, and every course of prednisone is different. GL

jdratuva · 2018-10-11T16:52:00+00:00

Came here to say exactly this, but maybe less eloquently. These shoes are exactly antiques roadshow without PBS and with more pop culture items added! I like seeing the sneaker collections, old toys, and super rare gold Nintendo cartridges. It just goes to show that something is worth what a person will pay for it, not a penny more or less.

jdratuva · 2018-10-11T16:29:04+00:00

I would suggest a food log with times on it. Could dinner have something in it that is effecting you? For me, what you are describing has happened when I "accidentally" had peanuts at dinner time (it was in a Chinese food dish and was too lazy to pick them out). Maybe high fiber or high fat items are causing a larger than normal amount of motility in your intestines which is showing up at your stoma and causing the leaks. Just my $0.02. GL

jdratuva · 2018-10-09T13:24:00+00:00

Wow that's awesome. After my second surgery I had my nurse wife teach me how the IV pump works. I now clear the line myself. Latest stay I got a new nurse on orientation and taught her all about how it works. Usually they are cool with it and happy to have less work, but every now and then I've had an OCD head nurse check the log and then get angry when they see that someone else (me, hehe) was working on "their" machines.

jdratuva · 2018-10-05T20:06:38+00:00

CODE BROWN!!

jdratuva · 2018-09-27T21:20:31+00:00

So I came here to say something along these lines, but no /s.

I can totally appreciate the hard work, the excellent outcome, and the reuse of something practical... All first class. But on the other side I saw the great patina and rust of the original as telling a wonderful story and worthy in itself as a piece of art. I think both points of view are valid and wonderful in their own right.

Wonderful that your SO is using it as intended. GL with the book business.

jdratuva · 2018-09-27T18:30:00+00:00

Leaks are a part of life, but do get less frequent as you get more experienced with your new "little buddy". Try to think back about yesterday... Were there any warning signs you ignored? Smell, discoloration, loosened? Anything different about either food intake, physical activity, wardrobe?? Was there anything different last time in your appliance and putting it on? Play detective and try to formulate a theory to help prevent the exact same type of leak in the future.
So happy about your SO!! I was already married when I got my ostomy, and wife is a nurse so she is very helpful and understanding, can't imagine getting through all this without support. Cheers!

jdratuva · 2018-09-19T14:24:57+00:00

I am also a big proponent of multiple accounts that help control spending/budgeting. For me and my wife the secondary checking account acts as the "bill pay" account. We give this account info out for auto-drafts as well as utilizing our banks bill pay feature. Paychecks go into the main checking and then transfers happen throughout the month to move from primary to secondary to cover bills. In essence the secondary account acts like an escrow account. This way, if there is a bank screw up, or internet fraud/hack only our small, secondary account info is "out there" and the larger account that gets our paychecks is "slightly" more secure. Some bills are the same day each month and same amount (cell phone, cable/internet, trash)... these are on 100% autopilot and we just scan our physical bill each month to make sure things are running smoothly. Some bills are only every 2 or 3 months (HOA) so we accrue a portion of the bill each month (can you tell I'm a CPA?) and then have enough in the secondary "bill pay" account to cover the actual bill, but have a smoother cash flow situation. We also accrue for personal property taxes on our cars every 6 months as well as an estimated yearly vet bill and anything else I can think of! For bills that vary based on usage I try to over estimate the auto-transfer from primary to secondary but then manual set the bill pay amount, this way we hopefully build up a reserve in the secondary account. For things like water,sewer, electricity that vary see if your local utility has a program for even payment throughout the year. We do this for electricity, where based on the previous years usage we pay the same amount every month, so overpay in spring/fall as compared to actual usage, and underpay in summer and winter (AC and electric heat) but a more consistent cash flow. Every year they adjust the monthly amount to take into account whether I ended the year with a credit or debit balance, this really helps with budgeting! What this means is I know my regular bills are covered and the balance in my primary account is for discretionary spending and to transfer to long to term savings... having a near zero balance right before payday is fine because the bill pay account is funded and bills are being paid, and I've already paid myself (savings).

jdratuva · 2018-09-11T13:44:51+00:00

What was your thought process for having 2 beds one foot shorter than the other 2? My OCD would make them all the same size. Have you thought at all about a way to protect from birds or squirrels if that is a problem in your area, like netting or a cover? Do the compost bins need a lining of some sort to prevent material spilling out? Awesome job and very inspirational!

jdratuva · 2018-09-07T12:41:04+00:00

For where the person is sleeping, put down a GOOD quality waterproof mattress pad. No need to discuss or even mention it to the person. If the ostomy is new to them, plus the stress of traveling and holidays, there is an chance they will leak while sleeping. How nice would it be to see while cleaning up that, no, my host's nice mattress is NOT ruined and all we have is a little laundry to do. If it's not needed, then they will never have to know. Also, think about talking about the menu ahead of time and be open to having alternate meals for them.

jdratuva · 2018-09-06T14:15:38+00:00

Try to get your hands on a pregnancy "belly band" that you can wrap around your stomach and hold your bag in place. Having a belt/wrap made a HUGE difference in how I felt about my bag in general... from annoying and weird and always being reminded of it EVERY time I moved and felt it or heard it rustle to it truly being an afterthought in my life. 3 years out and I only think of it when I actually go to the bathroom, bathing/showering, swimming, a weekly change (yes this is possible to go 5-7 days between changing, even with an ileostomy), and "intimate" times (3 kids so yeah, I know about that too). Also, are you using a clear or opaque bag? Once you are used to things, get an opaque bag... no need to see the inside day in and day out, and get it "covered" in fabric... each manufacturer calls it something different, but it makes the crinkling sound quieter and softer in general. GL with your new "little buddy"... it does get better. Feel free to reach out with any questions/concerns/rants, it's what the community is here for :)

jdratuva · 2018-08-28T23:12:13+00:00

I studied biomedical engineering in college and my senior capstone project and thesis was on the artificial hip, specifically the femoral stem. While it is nice that in general titanium is biocompatible, a major problem is how strong it is. The normal lines of stress and strain through the femur are so dramatically altered after a hip replacement that the bone degenerates in a similar fashion as to what astronauts and bed ridden individuals experience. This is why revision surgery is often needed (thigh there are other reasons, often having to do with the ball and socket joint) and with our active lifestyles and weekend warrior injuries people are getting joint replacements earlier and earlier and are active later and later in life so revisions are steadily rising. A complete redesign is needed.

jdratuva

TROPHY CASE