Legs feel asleep while on pot again!! Dam!!

[Gman]

New to the forum as well as your exclusive Crohn's Club!

As I am apparently in day 3 of the loving embrace of a "flare-up". Sitting on the house throne I noticed that standing back up could pose a problem since I no longer have feeling in my legs. That's a hell of an indicater as to the length of time on the pot! BOY THIS JUST KEEPS GETTING BETTER AND BETTER, there's nothing better to be doing on thanks giving with the family!!

Perhaps when I can be more than 500 feet from a bathroom....I'll make it to Home Depot this weekend for a cushened toilet seat! Since I will be spending some real quality time in this tiny room, some other modifications are in order...perhaps chargers for my iPhone, iPad, and laptop. A plasma for wall?? Upgrade the fart fan is a must, maybe put that baby on a 220 circuit! Fresh coat of paint to a more masculine color pallet. And let's not forget a triple high capasity sh*t paper holders.

Well fellow club members, very nice to have been accepted into your fine club. I'm sure it only gets better from here on out....and look forward to seeing what wonderful surprises await me in the near future:ytongue:

By the way how the hell do you stop a dam flare-up!!!! I just stop eating altogether....figure take the bullets out of the gun and no one gets hurt!!!

I'm on Humaia 40 mg x 2 per month, Methotrexate 12 mg 1x per week (sub Q), prescription Pepsid AC 2x per day, Protonics 1x per day, Prednisone 20 mg 2 x per day when needed (I really hate that crap!!), Lyrica 100 mg 1x per day, Cymbalta 160 mg 1 x per day (I know thats a sky high dose). And last but not least....the medication that every health care worker and ER doctor make me feel just GREAT about being on..Fentanyl patch 100 mcg changed every 48 hrs, or whenever the dam thing falls off in the shower. Aint NOTHING better than being treated like a heroin addict because other people have a abuse problem! Especially when falling though the doors of the ER because my pain is off the charts toteing my wife, 6 yr old daughter, and 4 yr old son behind me. I'll leave that alone for a wole new thread.

I think I can attempt to stand without feeling like I lost my legs.

HAPPY THANKSGIVING TO EVERYONE...Crohn's is like contracting type 2 diabetes on Halloween!! I can look but can't touch!!:ybiggrin:

 

[Nyx]

If I'm reading your post correctly, you said you take 20mg of prednisone 2x per day when needed? That's likely what's making you feel sick. Once you're on prednisone, you need to taper off of it slowly (usually by 5 or 2.5 mg per week till it's done).

And about the legs thing, I found that if I moved around on the throne a bit, I'd get the feeling back. If I sit a certain way I'd always get the tingling in my legs...must have hit just the right nerves on the backs of my thighs.

Good luck...I hope you feel better soon!

 

[Crohn's 35]

If I'm reading your post correctly, you said you take 20mg of prednisone 2x per day when needed? That's likely what's making you feel sick. Once you're on prednisone, you need to taper off of it slowly (usually by 5 or 2.5 mg per week till it's done).

I agree, you can't or shouldn't pop on and off this drug, and better OFF not being on it. Two times a day is strange too, most take it once a day usually in the morning and taper off like Cindy said. It is an evil drug.

:welcome: to the forum btw! Friendly bunch here. :smile:

 

[Terriernut]

Honey....you must lower the throne in order to do leg excercises! Either that or stretch em out, wiggle the toes, (picture yourself on the beach while you do this, it helps)

We have just talked about having an aquarium in the bog. I think it's a fab idea.

Pred...agree with advice you've just heard...Take all at once, in the MORNINGS in order to keep you from sleepless nights. You cant go on and off, it will create HAVOC in your bowel. And other things as well. Tapering should be done, at 5mg at most by every 7 days. When flaring the usual starting dose is 40mg...all at once.

And yes....you should call the GI's office. Welcome to CF...we love a good sense of humour!

 

[Astra]

Legs feel asleep while on pot again!! Dam!!

Hiya, I thought this meant you'd been smoking pot! No wonder your legs were wobbly!
Agree with the others, don't meddle with the Pred! Leave it alone, or stay on it for longer then taper.
Welcome to the forum, Enjoy!
Lotsa luv
Joan xxx

 

[Gman]

Thank you all for the expeadiant responses, as well as the advice on the prednisone, and taper. My GI as well as my Rhumatologist (I have been blessed with RA as well) were quick to pass out the prednisone like candy. I had been warned about the dark side of it and do have a taper regimen. As you all know the tapper can be some what lengthy (more so for some). I just didnt include that info in the original post. At one point I was up to something on the order of 30 mg 4 x per day...and did tapper as directed...truly prednisone has never been effective for me...not just with RA or CD but with other physical problems in which prednisone was prescribed.

A bit of back story on what i think is a fairly unique twist to it all. One that I have searched for another case that was close to my experiance.

I am a former recon marine that has seen 3 tours in The Afganistan mountin retreats. During my time there, my fellow marines and i came accross some nasty white/yellow powder in a local Talliban house that we helped the former occupants find that road leading them to the 77 virgins they have heard so much about. Shortly after our discovery, we started to hyper salivate..bleed out, tear up, loose sight and hearing. Our fine Marine training warned of just a situation. I what I am absolutly positive was the fastest the human body can move. We injected ourselves with government Atropine, not just some but all we had, with little improvement. We folloed with a 2PAM Chloride chaser...long story some im shure would rather be forgotten than talked about. It turned out to be a nerve agent cousin to sarin called Tabun. Tabun was used by the former USSR against the afgans in the 1985 conflict. They tipped 40 mm artillery with it and sent thier Tabun care package to the Afgans. Well as you can imagen, not all the rounds exploded...fast forward to 2002 and that resorsfull Taliban found it...and wanted to use it, however the lack formal WMD nerve gas training and never quit weponized it successfully, before I sent them to relax with thier 77 virgins.

So since that historic day that never made the local...or any other news. I seem to have had my bodies reaction to almost all and i do mean all medications to zip. Not meds have any affect. Disiered or side effects. I take all this crap because one..i dont have to pay for it. And two..i dont have a better option at this time. I get about the same relief that two advil use to give me before the exposure with 150-175 mcg Fentanyl. Prednisone and humaira even failed to show a significant effect on my WBC after. Being on it for 18 months. Docs do the best they can...and ive come to terms with that. I mean what more can i ask of them...and i have seen a lot from all over the country.

Hell Id chew on tree bark if someone told me it had a chance at working. So I just charge on and do my best to use my dark law enforcement humor defense mechinisum to get me down the road as normal as possibal looking for a treatment that works....and before anyone say clinical stem cell trials..they dont want someone as unique as my situation..it would get in the way of them haveing a clean control group.

Thank all

 

[Terriernut]

Well then. All I'm gonna say is, you've seen hell....looked it in the eye and said F$"* off! So, how long have you been diagnosed with 'Crohns'? Does it run in your family or is this something that has come about after your experiences?

The fact that no meds are working is very interesting. Not completely without precedent by any means dont get me wrong.

 

[Gman]

First let me apologize for the horrific spelling on my last post! :shifty: it was hammered out on my iPhone....dam little buttons!

I was diagnosed with RA about 2 years ago...during a flare to rule them all, I figured since I had nothing better to do that day, I would go and see if I could make some new friends at my local ER....it's only 2 miles away. While I was being totally ignored by the ER Doc as I pointlessly explained my unique situation. God sent me a very distinct new pain in my lower right side.

As the sensation quickly transformed to pain, the pain that rivaled the RA flare now in KICK A** form I must say. I went to the ER alone (I prefer it that way, I DON'T LIKE MY LITTLE GIRL SEE ME LIKE THAT) I once told my wife along time ago when she was worried about me for my chosen profession. "I can take a lot, dont worry, now is not the time....I will tell you when it's time to worry."

Well I hate that 1-10 pain scale the Doc seem to be so fond of using to gauge the severity of MY pain. So I will convey my gut pain to you all like this....I could hardly must the strength to dial my wife...when she picked up I simply said I need you now! it's time to worry.

Usless Doc. Just kept shooting the Dilaudid in me. With no pain relief at all, 6 mg in 3 hrs. All I could do was cry out in pain, as it hit in waves. I never thought I would be that person moaning loudly in pain so that the whole ER though someone was dying of traumatic limb amputation. But ther I was moaning and crying while my wife sat next to me.

finally my RA Doc got to me, and said I'm sorry , I should have seen it earlier... Crohn's...it goes hand in hand with RA and is an auto immune dissese.

He said he neve considered it because I don't fit the common CD profile..there I lay A 245 lbs fit 6,3 former Recon Marine, and current special agent who gets a full physical every quarter (3 months). Well I had a gross soda the off to the CT for a scan reviewed massive swelling. They were nice and asked me to be there guest in their newly renovated hospital with private rooms. The next day I had a camera stuffed in every orifice I have. GI Doc confirmed Crohn's.

that was in Feb. of this year. Being the type A person I am, I chose to simply ignore the CD. I see not that not even my pig headedness can over power this beast!!! I Had to figure out something else...so now I'm hitting it with my humor, it gets me by. But by no mean I have found the sought after cure for CD, :ybiggrin: I am blessed with the most amazing woman I have ever known as a wife. She has always been my strength and courage, without her I would not be able to do what I do, and would be the guy that stands at the door in Wal Mart and says HI HOW ARE YOU TODAY, WOULD YOU LIKE A STICKER. LOL

 

[Terriernut]

Well soldier. You've come to the right place. And I suggest your amazing wife have a look around too. Yes, Crohns can kick the best of us down to the ground, but I assure you we get up again and kick it's ass right back!

I'll die with one finger on both hands up and be proud...well, you know the song.

May I suggest you might just be ready for a wee bit of surgery to remove the diseased part so you may hartily partake of Thanksgiving in 2012? Have they given you any advice on that subject??

 

[IslandArts]

Hi G. Put the Xbox in the loo with you with a nice flat screen and Turtle Beach headset. Something to do while in there. See u online. Thanks for your service...helps keep where I live safe too.

 

[JohnnyRottenAppleseed]

I'd get an industrial carbon filtered air scrubber for the "fart fan" and make sure your vitamin D levels are 80-100 . May want to supplement with 4,000-8,000 iu per day D3 drops and make sure to take magnesium, zinc, and vitamin c. Sorry those *******s made you sick. Whatever you were exposed to weakened your immune system. If all the potent TNF blockers and and immunosuppressants didn't work then you may as well try some natural stuff. I'd read The China Study book about diet and hang around here. Your best bet may be to strengthen your immune system which is the exact opposite of taking pharmaceuticals for crohns.

PS i would try natural route before surgery if it's not too much misery. Do you alter your diet during a flare? How long do the flares last?

 

[Gman]

Hi G. Put the Xbox in the loo with you with a nice flat screen and Turtle Beach headset. Something to do while in there. See u online. Thanks for your service...helps keep where I live safe too.

No thanks ever nessisary.

As a Federal Air Marshal I have been to your great island many many times, I just hate having to fly those tiny dash 8 prop planes!

:headbang::headbang:

 

[Gman]

Well soldier. You've come to the right place. And I suggest your amazing wife have a look around too. Yes, Crohns can kick the best of us down to the ground, but I assure you we get up again and kick it's ass right back!

I'll die with one finger on both hands up and be proud...well, you know the song.

May I suggest you might just be ready for a wee bit of surgery to remove the diseased part so you may hartily partake of Thanksgiving in 2012? Have they given you any advice on that subject??

Thanks for the advice. If I can figure out a way to ween her off of Face Book I'll have her have a take a look.

One of my friends has CD and was diagnosed about a year prior to me. He went straight under the knife to have a little of that evil cut out of him.

Now I'm no stranger to surgery...mind you, I can think of other things to pass my time! One thing I really don't want is to have to be carrying around a bag!!....for any length of time. Anyways I don't want to get ahead of myself, it will ruin the surprise when that day comes. :lol:

I noticed your from the UK. I am ether in London or Manchester at least 2 a month with work. About 3 years ago, we were in London again and having seen and been everywhere, I decided I wanted to see Stone Henge. Rented a car got the guys loaded up and we set off....wrong side of the road a few times. We ended up stoping at a roadside diner called the Little Chef. Well I was not diagnosed yet with CD....but we noticed that the water and coffee smelled foul...like fish. We ate and drank it all anyway because...I'm a big dumb moron some times. 6 hours later in the hotel room it hit hard! And the poor maid that had to clean that room:ybatty:

Next morning in the First class lounge I was on deaths door. Canselled the return mission, and call for a ambulance to the hospital...my first encounter with your health system! Turned out to be food poisoning. Not my best London trip...but hay it was different from the previous 20 trips!!!!

By the way we all noticed a ton of farms that were growing what seemed to be bright yellow flowering crops in them...all three of us haven't been able to find out what all the farms are growing around London...have you got a clue...we met a Scottish guy who seemed to know...but none of us could make a word out of what he was saying!!!!

 

[Terriernut]

The yellow flowers are called Rape. Yes really. And no never eat at Little Chef! And I'm really sorry you got so ill with food poisoning!

I'm a yank actually. I've just lived everywhere.

 

[Gman]

I'd get an industrial carbon filtered air scrubber for the "fart fan" and make sure your vitamin D levels are 80-100 . May want to supplement with 4,000-8,000 iu per day D3 drops and make sure to take magnesium, zinc, and vitamin c. Sorry those *******s made you sick. Whatever you were exposed to weakened your immune system. If all the potent TNF blockers and and immunosuppressants didn't work then you may as well try some natural stuff. I'd read The China Study book about diet and hang around here. Your best bet may be to strengthen your immune system which is the exact opposite of taking pharmaceuticals for crohns.

PS i would try natural route before surgery if it's not too much misery. Do you alter your diet during a flare? How long do the flares last?

They last for about 2 days......However the real a** kickers can last 4 to 5 days and land me in the hospital. Still trying to figure out this diet...as far as my wife and I can tell, nothing really stands out as a trigger. I like to think I eat somewhat healthy but then again as an Air Marshal now I fly around the world 5-6 days a week. I can say when in New Deli I avoid eating altogether..come to think of it, I avoid breathing to while in New Deli. The wife and me were talking today about tying a gluten free diatribe for me. And when I flare up I simple don't eat anything..I figure I don't want to pour gas on a fire.

 

[JohnnyRottenAppleseed]

fasting during a flare is smart! you sound like a big guy so you can probably do fine taking a few days off eating. pay attention to any major weight loss. do you **** normal when you aren't in a flare? how many times a day do you go? eating out is playing russian roullete but it sounds like you can't avoid it. go for safe options wherever you are may be your best bet.

Have you ever tried Cipro and Flagyl together? Cipro is the nuclear bomb of antibiotics. You probably had some in your pack in case of Anthrax exposure. It wipes out most bugs. You have to take it with Flagyl to avoid C difficile bug. After i took Cipro/Flagyl it helped put me in remission. My Crohns was diagnosed after nasty food poisoning. It's a cheap and safe method worth trying.

 

[Gman]

I have taken cipero before when exposed to the anthrax sent to the pentagon in 2001. With no complications, however a few years after that i had a pylonidal cycst removed, it came back poss for MERSA and they put me on leviquin...a cousin to cipero, its in the same famile of antibiotics (quinalones). With that i did have an allergic reaction. Docs say it common for allergys to develop after only a few courses of quinalones...so the suggest it would be wise to stay away frome that whole class of antibiotic (4 total). I forgot the names of the other to.

Thank you so much for taking the time to post.

Fairly normal crap when im not in a flare..prob a little on the softer side 4 times a day. So i guess i cant complain.

 

[JohnnyRottenAppleseed]

The problem with cipro and other antibiotics is they can cause a c Dif bacteria outbreak. The scientist who discovered that C dif causes stomach ulcers won a Nobel peace prize o some kind of major award for discovering this. You should be tested for C dif bacteria it could be the cause of your diarrhea. Flagyl antibiotic will knock back c dif.

 

[Gman]

Ill tell my doc. I have an appt. For tomorrow. Never had c. Dif. But i do know that unique smell. Lol

 

[JohnnyRottenAppleseed]

I meant H pylori causes stomach ulcers do tell your doctor you want to rule out H pylori and C diff. Tell, don't ask. Opposite of military.