Not sure what's going on...

Sounds like may be an ulcer?  Or esophogas issue?  I have severe acid reflux most likely caused my NSAIDS. 

Other than that, how are you?  Did you move yet?

If emptying your pouch relieves it then that's where to look (inside or outside). I'm also thinking about those NSAIDs, causing ulceration or pouchitis. If some of those pain meds are opiates then issues related to gut slowing are also possible. Two months is an awfully long time to be recovering from a fall; perhaps you damaged something that needs a for-real repair?

Hypochondriac? You? No way.

I know that the NSAIDs are not good for me but there is nothing else that I can take to relieve the pain...I try to use the tramadol very sparingly...only at night or on weekends when the pain is so mindblowing that I cannot move or turn over.

Tylenol doesn't touch the pain but keeps it at a tolerable low simmer...I am sticking to Advil and not going stronger but the rhumy thinks that I can go up to 18oomg/daily...I will burn out my stomach and gut with that.

I know that 2 months is a long time but I ripped the ligaments from my big toe up to my hip...litterally...doing the flying splits (think Lucy from Charlie brown...flying through the air doing the splitz...and coming down with the back leg bent under her...now add my 150lbs to the impact!)

Did 2 X-rays at 2weeks intervals...nothing broken but inflammation everywhere...

The chiro has not been able to re-place the sacroiliac joint and the sacrum and coccyx are displaced (still)...I see the ethiopath next week and pray that he can get it back in place...the chiro does his best but with all of the inflammation he his fighting an uphill battle. 

This pain is scary...I feel like a knife just stabs me in the liver...each time...like something is pressing on me upwards and when I straighten or stand up it is a bit better...Cannot sit after meals...not sure if an ulcer cares if I am standing or sitting...don't think that it is that...

I do not want to start with the whole mess of tests again...what is the easiest way to see the area? Ultrasound? C-scan or MRI? Don't think that a plain x-ray will show anything unless someone left a sponge in there!

Sharon

sharon--what a bummer!  you certainly don't deserve this.  love the lucy image!

in my opinion, it's nsaids that caused an upper gi ulcer.  even if you get an upper gi scope--with anesthesia it's not too bad--the solution will be the same.  stop

yes i know your pain is terrible, but gotta bite the bullet and use ice and yoga/stretch/pt exercises.  can you see a physical therapist instead of a chiro?  i think pt develops muscles that aren't being used properly and thus one is better able to sustain their recovery.  

 have you tried celebrex?  it's the one nsaid that isn't suppose to cause ulcers, although it does for me.  other than that it's tylenol.  good luck.  janet

It's hard to tease apart the different things that are going on. A physical exam can help narrow down the lingering injuries, which are likely more than chiropractic issues. The problems from the NSAIDs (if that's what's going on) are best seen on a scope (pouch and/or upper GI). Acid reducers (like ranitidine) might help with upper GI irritation. Celebrex might indeed be an improvement *if* it works for you. Also, NSAIDs work best if taken continuously, since they prevent the production of pain chemicals but don't affect those already produced. A lower overall dose might be effective if gaps are avoided.

I'm so sorry you're going through this. 

Sharon I wish the best for you.  You and so many others on this sight have helped me over the years. I know that you have been thru so much.  I hope you feel better soon.  

After a big fall, and chronic NSAID use, I'd be concerned about a hematoma inside that is causing pressure near your pouch. You could have torn an ahesion or something that could have led to a bleed inside. After 2 months, this should be getting better, not worse. Remember, NSAIDs interfere with clotting times all over your body, not just irritiate the gut and cause bleeding there.

An ultrasound would be the cheapest.easiest way to rule out a hematoma. A CT scan might reveal other things going on.

Jan

Hi Guys, 

A little update. I saw one of my surgeons who has put me on Omopral (don't know the U.S. name for it but it is a gastric barrier) because he thinks that I have gastritis...he told me to try it for 5 days and if the pain goes away then we have our answer...

I have been on it for 3 days and the pain has mostly gone away...So that could very well be it...not at all what I expected but wonderful if that is all that it is.

He wants me to keep taking it for the duration of the NSAIDs usage.

The problem is that he doesn't want to prescribe any ultrasounds or xrays...so I don't know what is causing this pain.

My Ethiopath cancelled again last week and I am suffering to the point of sleeplessness. He has promised to see me this week...if he can just put my bits and pieces back where they belong I am sure that I will get some relief.

Sharon

You are probably taking omeprazole (Prilosec), a proton pump inhibitor. Makes sense, since your pain was associated with eating. Your doc is right that the fact that the effectiveness of the drug is diagnostic. Still, it means that NSAIDs are not your long term solution, and eventually, you'll have to figure something else out.

Jan

 Sharon

I had been taking 150 mg Lyrica twice daily for pain. It is supposed to target the central nervous system, as I understand. One of my doctors, at some point--it's a bit of a blur to me when and who – – prescribed  it off label for general pain. My PCP said it doesn't help w lumbar spine pain  and quit prescribing it. I beg to differ with him. I would think that stenosis and scoliosis have some affect on the nervous system. Not sure.   Or it has a powerful placebo effect and that works for me too.  At any rate I know I've been in excruciating pain since going off of it, and restarted with the few pills I had tonight.  throwing this info out as a possible suggestion for you.   Jh

Thanks guys, 

Yes, it seems to be working and that is amazing (I have a huge family event this weekend...4 full days to eating, drinking and sitting around and the idea of being doubled over in pain during the whole thing was impossible...Bad enough that I cannot dance or wear high heels from the pain).

I am still having a bit of the 'knife in the back ' pain associated with gallbladder issues (no gallbladder anymore) but it is getting better...

I have gone onto Robaxin for the back pain but it contains an NSAID too...it helps a bit but yes, the next step is trying Lyrica...They gave it to me when I had bunion surgery and I stayed on it for quite a while (about 6 months) and it seemed to help generally but I stopped once I was feeling better and got a handle on the pain on my own (exercise, swimming, yoga and pilates)...

I feel a bit better after 1-2hrs of intensive exercise (lots of yoga, stretching and torture) but that doesn't last very long and I can't do it every day...no time...praying for relief here...The latest x-rays show tons of inflammation at the site. This is destroying my life! 

Keeping my fingers crossed that all of the hope that I have put into my Ethiopath is not for nothing and that he can crack the crap out of my lower back...

Off to work out and pray for relief.

Sharon

I'm glad the gastritis has improved, Sharon. I had the thought that gallstones can sometimes develop even after gall bladder surgery.  It's called post-cholecystectomy syndrome. I'm guessing an ultrasound would be the right diagnostic test for that. 

Can't you get plain Robaxin (methocarbimol)? I've been using it for years at bedtime and mine has no NSAIDs, so I know they make it.

Jan

Now that is an original thought...I didn't even know that it was possible...I will have to see if I can get my radiologist to do an ultrasound...not an easy feat here...but thanks for that idea...genius.

I think that I may be combatting adheshions in there too...not that I made a lot but lately (in the last 8 yrs) I have been having problems with them...and this is an old surgical site, even if it was done through laproscopy.

Yes, the gastritis is definitely better...

By the way, does omeprazole inhibit or capacity to digest foods? Just wondering...my k pouch is finding more undigested stuff...Should I be chewing better?

Sharon

Incomplete digestion isn't listed as a side effect of omeprazole. OTOH, the acid is there to help with protein digestion, so I'd expect some effect from reducing it.  In any case, chewing better is a sensible response to finding more undigested stuf, regardless of the cause. 

sharon--some non-prescription suggestions to treat inflammation.  my apologies if you are already following this routine or have tried it.  food choices make a difference, with refined sugar being a huge culprit along with cheese.  lots of info on internet.  omega-3 fish oil supplements are suppose to help.  can't tell a difference when forget to take them.  nor could i notice a difference with turmeric supplements, although some people on this site swear by them.

i think you are on to something re adhesions.   mine were removed, with the k pouch surgery, and lot of pain vanished.  of course there were other variables with that surgery, but i do think the adhesions had been causing pain.  keep at it!!  keeping up with health care can feel like a part-time job sometimes.  yes? janet 

Can you use a topical option for your back pain? My rheumatologist gave me some kind of concoction the pharmacist had to mix with diclofenac  and a painkiller, although it was for my chest joints, not back. It has worked miracles and I am completely off oral ibuprofen. The prescription version in 10x stronger than voltarin and I use to get "I need tramadol" level pain in my chest cartilage and ribs. 

Janet, 

Yes, we work harder on our health some days than we do on our jobs...really, exhausting! And yes,  there may very well be adhesions playing with my guts...not impossible at all...my problem is that I was pretty much adhesion-free for most of my surgical life...and now they are just blooming all over...which would be fine if my darned ligaments became more solid and stronger in the process but they aren't!

I have been using turmeric for 15 years...in my cooking, not as a supplement but I get a great dose of it daily...as well as eating more fish than most fishermen! My diet is pretty healthy other than my sugar intake...as for the cheese, I live in France...(and cannot drink wine or eat Fois Gras) so I need cheese like an addict needs a fix! (our cheeses are non pasteurised so they are healthier than the U.S. kind). 

I take tons of supplements including silicium, collagene, and Vit B6 & 12...hubby now calls me the pharmacy!

Duck,

The topical route may be the way to go but I need someone to prescribe it and I have not been able to get in to see my GP in 3 months! He doesn't take appts and I have sat around for hrs on uncomfortable chairs until giving in and giving up...nothing can be done without him on the allopathic route!

I am already on Tramadol (although I try to limit its usage to nights and weekends only because of my job and fear of addiction!)...it barely touches the pain...I am running at a 8-10 on the pain scale some days with vomiting and knocking my head against the wall as a serious side-effect! 

It feels like I have a broken hip/sacroiliac joint. I cannot lift the leg, it will not follow me...so like I got kicked in the kidney (no, no kidney stones!)...

Massage doesn't help, sleep is both a blessing when I fall deep and a curse because there is no comfortable position when in bed...I keep twisting and trying to 'crack it back in' although that is impossible!

At this point, I may pay the older grandkids to start jumping up and down on my back...you never know (I am now afraid of breaking something if I do)...next stop? Cryotherapy...I am going to go into a subzero freezer and see if that helps or just fill the tub with 25lbs of ice and freeze my butt off for 20mins.

Yes, this is a full-time job and destroying my life.

Am heading for a massive depression if this continues...I can feel it coming on...sleeplessness, pain, helplessness and no one is helping! (or understands!)

Sharon

sharon--that's entirely too much pain for anybody!!!  help.  and immediate help is needed.  in the states there are pain clinics/doctors and i am wondering if you can't find one in france.  they like injections and meds, which you have already tried to no avail.  however, they might provide a holistic approach and also work with your rheumatologist and other docs.  

topical applications--lidocaine patches or nsaid topical creams--never made a dent with my spine pain, so i stopped.  never heard of duck's special formula and maybe something like that could be helpful.  

i'm back on lyrica and can testify that it makes a big difference.  no doubt my pcp will say it's an expensive placebo, but at this point i don't care.  

need to re-start pt for my spine.  several years ago i went through a 'boot camp' spine pt program and it lowered my 8-10 pain to minimal.  spent a year at boot camp and an hour of pt exercises at home, which i continue.  best thing i ever did for pain.  far better than cortisone injections and/or surgery.  the exercises are a crucial element in my part-time job of health maintenance.  

keep us posted.  good luck with getting appointments.  dreadful about your GP's schedule.  janet

Thanks Janet,

Well, I have been doing the PT for years...he puts heat lamps on me for 15mins, then massages for 15 and finishes with 15mins of Tens machine (those vibrating ultrasonic patches)...did that for years to no avail...the only thing that helped and nearly 'cured' me about 75% was the 3hrs/day swimming and doing aquagym...my summer routine.  It allows me to lower my pain to about a 3...since the slip & fall this Aug, I am back up to an 8-10 and desperate...I feel like I ripped all of the ligaments (or muscles or whatever I ripped) from my big toe to the bottom of my spine. (sort of did).

I have the pain patches, no great results. Heat helps, cold helps but exercise (yoga, pilates...) helps a lot more. It gives me a few hours of relative freedom.

I need to see my GP and Rheumy to get into any pain program...and that seems like an impossibility...I may just call him and ask to for scripts...(he doesn't have a nurse or secretary...almost no GP does here) so he rarely answers his phone...the major problem with socialist healthcare is that no one wants to be a GP anymore, no money in it.

My rheumy refuses injections (infiltrations) because they destroy the joint over time...but I may go back to the idea of Discogel...they inject some sort of gel substance into the discs...it is supposed to be very helpful but my Rheumy is sceptical about the long term side effects..what happens if there is a problem with the substance or it leaks? 

I have a huge family occasion tonight...high heels and evening gowns and all I want to do is hide in bed with an ice pack and heating pad...this is not a life.

I cannot even enjoy the most important day in my G-son's life.

Crap

Sharon

damn, what a bummer to not be able to fully be present for the family event.  i'm so sorry.  and people without pain don't understand it.   it's strange about pain, once it is gone i can't recreate it in my mind--i think that' s a good human survival trait, but can lower people's empathy.  

do what you can, enjoy what you are able to.  hopefully the event will provide some pain distraction.

if you went into the ER would you be able to get medical attention.  perhaps get a Rx for celebrex--that's the nsaid that for most people doesn't cause gi upset--or lyrica?  pity about getting appointment with GP is so difficult.

sending you a big healing cyber hug.  stay strong,  janet

Well an sort of update...Got in to see my Ethiopath's replacement today.

Did a full work up and low and behold, I had a subluxation of the right clavicule, probably since I fell...That would explain why I couldn't lift my arm over my head, turn my neck or rotate my shoulder...I thought that it was the should joint that was dislocated...it hurt like hell but he got it back in (so that was the huge bump I had on top of my shoulder!)...bump gone, pain too.

I can turn my head now (he put the cervicals back in too.

The lower back is another story...he got some things done, but couldn't get the most important one...too much inflammation going on. 

For now I am in a world of pain but better pain (?!?)...the kind of post adjustment pain that says that in a day or 2 I should feel a bit better.

By the way, it was something in my thoracic spine that was causing the pain in front (pyloric valve spasms?)...a displace disc? He put it back in and the knife evaporated. 

So I am not perfect (never was) but a bit better.

I see him again next week for the follow up.

Sharon