P. Poster’s Posts
on 6/4/15 12:18 pm
NSAIDs do absolutely nothing for my pain, I was just using it as an example of how the Dr just doesn't quite "get" the DS. I have only been at this Dr for one visit so far, as Ive just moved. Ive had some extensive conversations with him via phone though, and have provided him with some vetted DS info to read up on and plan to further educate him at my next visit. This is a top rated practice with several Drs in house, and unfortunately, the only one in a 100 mile radius that both offers the procedures I need and takes my insurance, so no real other options besides trying a different Dr in the practice (which I will absolutely do if he refuses to get on board). Im certain that MOST of the issue with this Dr is that I am a new patient and being the nature of the pain management beast- Im sure he's heard EVERY excuse in the book from drug seekers and it may just take some time and talking with him and possibly some referrals to have him speak with other Drs on my team that have known me for years and years (including my DS surgeon) to get to the point he trusts Im not just another drug seeker and really DO have a valid reason for thinking outside the box and using things off label or above typical dosing.
My concern really is for some suggestions on medications that other DSers have used- possibly in other formulations or administration routes that have worked for them around our malabsorption. I don't want to keep wasting money on meds that I try for a week or two (or more for some of them) and just keep having the Dr increase the dose for something that just won't work for my altered anatomy (like the Savella, Cymbalta, Lyrica, etc). My goal is to find something that works, at as low a dose as possible, for use as a rescue med primarily. Im relatively young, with a child and a job that require me to be "on point", and I spend over 20 hours a week commuting between work and my daughters private school- so nothing that will incapacitate me to the point I am unsafe. I also don't want to get into the risks of addiction or the need for ever increasing doses due to drug acclimation. I plan (well, hope is I guess a better term these days) to have many many many years in front of me- so practicality and limited use of effective meds are of utmost importance to me. :)
on 6/4/15 12:58 am
Hello to all, great to still see so many old faces!
I am 5 years post DS surgery. Ive maintained my 140lb weight loss without issue, and survived major plastics work (with much issue, but thats neither here nor there). Now that my Drs can no longer blame my weight for anything- I have finally gotten some long standing issues diagnosed and am in the process of going through treatment to try to finally get my life back. Some history- I am 36 years old. I have Spina Bifida, degenerative disc and joint disease, Rheumatoid Arthritis, Osteopenia, Scoliosis, Reversed Lordosis, Lupus and Hashimotos Disease. Im also in the process of finding out whether or not I have Thyroid Cancer and testing for a new neuro/muscular something issue that has cropped up in the last year. Possibly MS, but all the testing isn't back yet... I also have some sort of genetic metabolic processing disorder that they are trying to tract down. This causes a host of issues, one of which is processing medications, which of course has become even MORE difficult post DS surgery. ANYWAY- to say I deal with chronic debilitating pain is an understatement. I get spinal blocks and ablations to deal with the spinal issues, and those work really well, with some breakthrough pain here and there. The biggest issue is finding something to treat the RA and joint and nerve pain I have. Ive been on countless different meds- both narcotic and non. MOST of them don't work. Even local anesthetic given topically or IM doesn't work. Fentanyl patches don't work... Oral medications- some work, a bit, for a short period of time, in high doses- but this brings with it the fear (and frank reality) of potential dependance. SO- Im coming to the group to see what, if anything anyone has found to work for them.
Heres a list of whats been tried- without success- or with unsafe levels required-
The new formulation of Oxycontin- its an extended release, which begins to work 1-2 hours after taking. I don't absorb a bit of that...
Percoset and others like it (Lortab, Vicodin, etc) work, but only for about an hour and I have to take a higher dose than safe
Most muscle relaxers- (the only one that helps a bit is Flexeril, but it interacts with another med Im on)
Cymbalta
Lyrica
Savella
Fentanyl patches
I can't take the following due to them causing issues with my Sphincter of Oddi Dysfunction-
Coedine
Morphine
Roxicet
So- Im kind of at a loss. My pain management Dr doesn't really understand the DS- no matter how much Ive explained, how many diagrams and articles Ive provided and how much Ive requested he read into it. He still calls it a gastric bypass and refuses to give me NSAIDS... I would prefer to limit my use of narcotics. Anyone have anything they have found that works? That we actually absorb? Something outside of the box that may help?
on 5/4/13 11:54 am
Find some heavy boots, load em with quarters, roll quarters and put em in your pockets, undies, and bra, wear a few layers, get bean bag weights and tape them around mid section, etc. Voila. 20lbs. (PS_ keep in mind this is, technically, insurance fraud. Sometimes though, the insurers truly dont have the patents best interests or even their OWN at heart because in the end, the surgery is a one time fee of "x", but the comorbids are a lifetime fee of a hell of a lot more).
on 5/4/13 7:22 am
A few things.
1. Stalls, especially around 6 weeks= NORMAL. Your body is catching up after going WTH just happened here? Am I dying? HANG ON TO EVERYTHING!
2. Stalls- get used to them. They will continue to happen. Weight loss for many of us has been like stairs, not a slope. Youll lose a bunch, then hit a landing, then lose a bunch, then hit a landing. Just keep doing the right things and it will start again, in time.
3. Stalls- everyones last different amounts of time. Some are a week, some are a month, some even longer. They will break eventually.
4. Ways to break stalls- increase your protein, a LOT. Use shakes. Have a carb up day. Increase your fluids. Start exercising. Learn the patience of a priest. Stay off the scale. Pick one- try it out, see how it works for you. Everyones stall breakers are different. And, all of these options (except carb up days, of course) are GOOD FOR YOU, so do em and do em often anyway.
Breathe. Relax. Smile. Your DS is still working. And you will get there.
on 4/29/13 10:05 pm
3 years out here and chicken, turkey, pork or ham all cause me issues unless they are just about drowning in some kind of sauce, or cooked until they are VERY tender, like falling apart melting. I cant do grilled chicken at all. Not the tiniest bite, chewed to complete mush, and swallowed with a sip of water even. For some reason, it just doesnt sit well. Now, take that same chicken and cover it in butter sauce, sour cream/cheese/guacamole, etc- and Im fine. Steak, fish and shellfish have always been the most agreeable "dense" proteins for me. Dairy and eggs are by far the easiest and always go down fine.
on 4/29/13 10:00 pm
Yes, you can use one. Just be mindful that it can add some air bubbles to your tummy and until your stomach relaxes a bit and you are able to burp well again, it can be painful to have extra air in there. At 3 years out, I prefer to use straws now. It helps me ensure I dont drink too much at once.
on 4/29/13 9:57 pm
Got my "compression" garment yesterday at postop visit. Its not very tight, at all. Just kind of like wearing yoga or legging pants, over my entire body. Is that normal, or should I call and ask them for a smaller size? I mean, I have seer sucker underwear that are tighter than this thing... I will say, the fabric is very nice and soft and smooth and doesnt itch like the binder did. And for the mean time, I am wearing the binder OVER the compression garment for some added support, because with that, I can really wrench it down tightly.
In any case, if I had to compare the compression garment they ordered me to spanx, it would be like wearing a loose plastic bag as opposed to being shrink wrapped. Im thinking I need a much smaller one....
on 4/28/13 9:43 am
It takes about 3 or more weeks to form a habit and just a bit longer to break one. Triggers will always be there. Give yourself an out. Bring a togo pack of nuts, a SlimJim or jerkey, shelf stable cheese, a protein bar you love, a pack of gum, or a few sugar free candies, or a bottle of flavored water, or your toothbrush (every time you want to cave, force yourself to go brush your teeth, nothing tastes good with toothpaste, LOL).
My day is STILL completely wrapped up in food. What Im going to prepare or go get. If it has enough protein and fat, etc. At some point, your mind will just shift, and it will beome more natural and you will just walk right on by that stuff and not really give it much thought (unless youre PMSing like me, hhaha! It does get easier though, and every time you replace an old junk with a new health food is a little win and it is wrth it1
on 4/28/13 9:34 am
It helps a *little*. I will say, I take FAR more than the recommended dose for it to *help* though. I keep them with my at all times (along with GasX Strips, which again, really only help a tiny bit) just in case I happen to be somewhere there really arent any good options for me, or there are options, but they are "iffy". (prime examples are catered events, family functions, firehouse meals, weddings, etc). Ill take like 4-6 of them if I end up using them, and it will usually take the edge off, control the bloating to some degree and limit the gas a bit.
Same goes for Immodium. If I am somewhere I know I cant get to a bathroom for a long time (we sail a lot, spend a lot of time on the beach, etc), then I'll pop 4 of the gel caps after my usual morning BM to ensure there arent any "surprise" needs through the day.
As with everything DS though, YMMV. And I dont advocate overusing ANY of these things or using them on a regular basis.
on 4/27/13 5:01 am
Sounds like you are doing QUITE well! Dont push yourself though. I felt AMAZING at about a week out, overdid it and then set myself back in a huge way. Just take things slow, you have the rest of your life (and it will be much longer now :) ) to rev it up and go go go. Dont forget to pack some emergency food (something with protein and a bit of carbs, peanut butter on whole grain crackers were my savior, or a baggie of cashews) and a big bottle of whatever you can drink comfortably with you everywhere you go for quite some time.
My favorite place to go was the mall to walk around. Always a bench or somewhere to sit every 50 yards or so, plenty of bathrooms, lots of places to get a drink or a little snack if I needed it, and great for people watching and feeling involved again. They also had wheelchairs available if I just couldnt go any further :) AND looking at all the cute clothes in stores Id NEVER been able to dream of shopping in before was great motivation and reminder of why I did this to myself in the first place :)
The wows will start to come quickly now- jot them down and refer back to them during your stalls (which will also start to happen and are NORMAL, I promise!).
Oh and REST! Rest, sip sip sip, walk, walk, REST, prop your legs up, nibble, nibble, SIP, walk, walk, walk, sip, rest, nibble.
The cracks sound more like from when you actually had your operation and they had your mouth open and dry for so many hours. We dont really malabsorb B vitamins too heavily, and a deficiency wouldnt show up that quickly. Id use some Carmex or Abreva on those areas for a few days and see how they come along.
on 4/27/13 4:45 am
I ended up going to my local ER and working with them. I explained the doses the PS was trying to tell me to take of the narcotics and the mix and how it made me very uncomfortable. I asked if they could do a local or a nerve block- and they said no, but they DID say they could give me a Fentanyl patch at a low dose to get me by until Monday when I could be referred to a pain management Dr for further eval. They also pulled a drain that hadnt put out anything in over 24 hours and appeared to be pressing on a sensitive area on the CT they did. The CT found a few pockets of fluid- seroma, cyst, etc, which Im not thrilled about and hope my body will absorb on its own, and also some major pockets of swelling. Nothing that needed immediate attention and my labs all looked great. No evidence of infection, yet, even though Im running a fever.
Anyway- I got home from the ER at 2am with that Fentanyl patch on, laid down and didnt wake up until 2PM! I slept, completely PAIN FREE and comfortable for 12 HOURS. Ive now been up and moving for 40 minutes and I feel GREAT! Yes, Im sore, and tight, and things pull here and there- but the PAIN is gone and I can function.
Now tell me WHY- my surgeon, when I asked him about this twice preop, once the day of surgery, and then about a MILLION times postop, wouldnt agree to a a pain patch, and would rather continue to dump unsafe levels of STRONG narcotics in a bad combination down my throat? Lets take a look at risk vs reward, shall we? I think this is a perfect example.... Grumble. Oh well, its in the past. The pain is manageable and much better, I can now truly get around better and ditch the high level narcotics and all their lovely side effects and get on with healing. Thank God.
So thats my update. Things are looking up and going about as well as I could hope, I guess. Thanks for the ideas, thoughts, prayers and lizards!
on 4/25/13 9:52 pm
He wont call anything else in. He "doesnt prescribe those medications". I KNOW what will work for me, Fentanyl. Its the only thing that has ever worked for postop pain for me without causing either allergic reaction or billiary tract spasm (which is a whole new level of pain), but he flat out refuses to give it to me. He called in Ultram and told me to take Tylenol. Gee, thanks. He also said to just keep taking more Oxycodone and Valium "take 3-4 of the Oxy and like 3 Valium, wash em down with some Benadryl and Tylenol and see what that does". You know what that does? It KILLS MY LIVER. Im at the point where Im just going to ask for a bottle of Novocaine and a syringe and just give myself little shots of local. The muscle pain is more than tolerable. Its the incision pain that is killing me (because he doesnt use local anesthetic apparently?!). And until I can get ahead of it, no matter WHAT I take in whatever amount wont take the edge off.
His reply (and THIS is what pissed me off the most)? "My patients that are in excruciating pain cant get in and out of bed by themselves, cant get to the restroom alone, cant do their walking- and you are having no problems with that." RIGHT, because THOSE people the muscle pain is worse for one, and TWO, because I am in the medical field and I KNOW my history of blood clotting issues and what would happen if I acquire one of those, I am FORCING MYSELF through the pain, shaking, and vomiting along the way because of it to GET UP AND MOVE so I DONT DIE. Its amazing what having small children and a will to live and a real understanding of complications will do for a person- pain or not. Dont tell me just because I CAN do those things and force myself to, that you "just dont buy it" that Im in pain. Needless to say, Im pretty unhappy...
And thats before I even get into any discussion about the results and surgical incision placement and the fact he thought some (very obvious) lack of symmetry was OK because I had some before surgery. NO, I had surgery to CORRECT those issues, and we marked out the incision lines with a bathing suit I will actually WEAR so that I would be able to. But yeah, well just ignore that and do whatever the heck we want anyway... He also then chose to tell me that he "didnt really tighten up my muscles too much, because he didnt think Id like the result and that it would have made it more likely Id need an anchor cut incision (which is something we never really discussed).
on 4/25/13 6:28 am
Thats the problem, they never got me to a point where I WAS ahead of the pain. And I cannot get there on what they gave me :(
on 4/25/13 3:23 am
I had a LBL, mons lift, buttock autoaugmentation. The pain. OMG. Im wondering if due to my DS I am not absorbing or am losing the pain meds too quickly? Have just not been ablo to get ahead of pain. I have no compression garment yet, surgeon doesnt use them till one week out... Incision is healing nicely, although it is very uneven and nowhere near where we drew out that it was supposed to go. Im pretty upset I have an incision in a V shape on the outer thigh on my side that extends about 6" below where my leg joins my abdomen. It will never be able to be hidden. He WILL be fixing that come hell or high water. It looks awful.
on 4/25/13 2:48 am
And boy do they ever suck. NO comparison to the DS. None. The pain is so much worse. Serious regret, as of right now. Not pleased with the results. Praying time will improve things dramatically. Just trying to deal and get by right now. But wanted to check in. Thanks for lizards.
on 4/22/13 2:40 am
Never had a single episode of heartburn or reflux or anything (even when pregnant****il I had my DS. NOW- i have a hiatal hernia, GERD, severe reflux and a few ulcers. Good times! Another gift from my DS. Im on Nexium, 40mg per day and use Zantac 150mg for breakthrough ALL THE TIME.
on 4/22/13 1:13 am
High fat, all the way. I havent counted a fat gram in over 3 years. My cholesterol pre-DS was almost 300. Now, I STRUGGLE to keep it above 100 (it always comes back too low now). If I didnt eat high fat, Id also never poop. Fat is essential, and as a DSer, we no longer absorb about 80% of it. Oh, Id also be dry to the bone and my hair would be crispy if I didnt eat high fat. You DO need fat for your body and brain, and it is tough to get enough of it as a DSer.
on 4/21/13 11:04 pm
Happy Monday to all. Surgery bright and early tomorrow morning. I am SO ready to be rid of this extra skin!
B- protein coffee
S- 2 eggs, 2 slices of smoked gouda, 4 pieces bacon
L- BLTE- bacon, lettuce, tomato, egg & mayo on 1 piece whole grain bread
S- cashews
S- cheese & salami
D- ? Havent thought this far
S- protein milkshake
Vites- all in except lunch batch held for surgery, plus 3 doses of Arnica
Fluids- all in
Exercise- just walking, dont wanna risk sore muscles on top of surgical recovery, haha
on 4/21/13 11:00 pm
I think the JRobb Shakes are only egg protein, Ive never used them though. I will say, I was not a big dairy person before my DS (unless you count the 1/2 gallon of ice cream Id eat in 3 days), but I would pretty much die and starve now without dairy. MOST of my meals contain some sort of dairy and I use cheese to boost my protein on everything (literally, I now put cheese on everything).
You *may* find that after your DS, dairy wont be an issue, its possible I guess. Outside of that, youre going to have to eat a lot of eggs and meat, and supplement with nuts and soy and beans (which will be negligible really).
on 4/21/13 12:24 pm
I go for the real deal. The SF stuff kills me. As does most soft serve these days. I can eat only a few kinds of ice cream without major distress, and those include Baskin Robbins and Haagen Daaz prety much. Outside of that, its gonna be a bloated, gassy, stinky night.
on 4/20/13 12:31 am
Thank you! This is my first "real" incision surgery. I have to admit though, Im not really worried about it. I think I am TOTALLY underestimating the recovery most likely though. Ive been reding on the PS board for a long while now and it seems that people either think the recovery is a breeze or they think its the worst thing theyve ever been through. I have a very high pain tolerance so I think (hope) I will be OK. In the end, it will be WORTH it, no matter the pain. Its temporary and the results are for a lifetime!
on 4/19/13 1:32 pm
I eat completely normal. If I didnt tell people I had WLS, they would never know. I can eat a normal portion, of normal food, anywhere I go, including rolls, salad, entree, side dishes (bites here and there) and even a few bites of desert with a drink. Tonight for example- I had 8 (yes eight) buffalo wings dripping in ranch and 2 pieces of bacon pizza, including crust. No issues. Bonus? I dont have to worry about gaining an ounce or my cholesterol being through the roof, or my blood pressure going up from the sodium or anything. I dont eat pizza everyday, but I have it once a week and I enjoy it! I get the wings to make sure I get my protein in first, then I have pizza with whatever room I have left. Sometimes its a bite or two, sometimes its a piece or two.
I cook regular meals for my family. A protein and sides. I will either have a few bites of the starch I make for them, or not, depending on if I am full from my protein and veggies. I also switched over to low carb pasta, and low carb breads for the whole family, and we are all happy to be "meatatarians" here. Even my 5 year old prefers meat and dairy, fresh veg and fruit to anything else. I sitll make at least one pasta dish a week (with Dreamfields) and tacos, casseroles, crock pot meals, soups, stews, etc. Nothing has changed really. I just make sure to eat my protein first and make low carb selections where I can.
on 4/19/13 4:56 am
HAPPY THANK GOD ITS FRIDAY! Ohmigosh, this week was FOREVER!
B- protein coffee
S- 1c cottage cheese w/4 dried apricots
L- garlic chicken and brown rice leftovers
S- cashews
S- cheese & salami
D- its pizza & wings night! SO- about 4-5 huge chicken wings w/ranch and 1-2 pieces of bacon lover & garlic pizza from our favorite place- oh and beer. MMM Friday :)
Vites- all in except held lunch batch, added in Arnica for preop prep
Fluids- all in
Exercise- rest day
