Fifa's Surgery 11/10/14 with Dr. Buchowski

[fifa]

Hope that you are finally settling in at home. Sending you healing and good bowel movement messages.
Susan

Hi, Susan -

The bm messages helped more than you know. I'm taking not only a Senokot laxative daily but also a Dulcolax stool softener daily. Thought I was developing another ileus a few days ago, but apparently things (knock wood) are starting to normalize.

I will say, though, that I'm going through some really emotional upheaval that has been hard to deal with, and I'm pretty sure it is the drugs. I'm typically on a pretty even keel, but lately, the dumbest things are making me cry. Not just a tear or two, but downright heaving sobs. I'm crying kind of a lot and pretty much for no reason. The other day, I opened a small bag of dog snacks and the bag split apart - thousands of teeny tiny dog treats all over the floor. Had to call hubby in to pick them up before the dog had snarfed them all. Well, that send me into about an hour's worth of sobbing. Also, an this is new today, I'm starting to get a little pissy. Like irrationally pissy. For now, anyway, I'm blaming the drugs.

I should mention that this week they changed the Oxycontin over to Percocet (I don't know the dosages off hand) and also have me on Valium 10 mg (diazepam). That, the laxative, and the stool softener is all I'm taking.

If any of you have any similar experiences and/or any advice to share, I should would appreciate hearing your stories.

Thanks - love and gentle hugs to all.
Fifa

[leahdragonfly]

Dear Fifa,

I don't think your emotional state is out of the ordinary at all this early in recovery! I agree the drugs can mess with your head and moods a lot, which doesn't help things. Right now you are in survival mode…you have just within a matter of days gone through likely the most traumatic medical event in your life, the closest thing to dying you have experienced. It is just extremely traumatic, the stress, fear, pain, uncertainty, sleeplessness, lack of medical support being booted out of the hospital way to soon, etc. I can completely relate to how you are feeling right now, and I can promise you it will pass.

I really think there is some sort of post-traumatic stress component to this recovery that is rarely discussed, even here. I was somewhat disoriented and delusional in the hospital a couple days before discharge and thought the mean male nurse from ICU was now working in my ortho area and I was afraid he was going to come kill me during the night. I clearly remember these thoughts, and my husband had to go talk to the nurses so he and they could reassure me. I also had a couple of really rough nights in the hospital, probably day 2 and 3, where I was so sick and in so much pain with no nurses in sight that I thought I might literally die. It was terrifying. Once I got home I had some panicky feelings about how my new back felt that were difficult to cope with. I remember walking slowly outside into the moonlight on a cold clear night to look at the stars, and imploring the sky to give me the strength and ability to cope with my situation. I felt so helpless and defenseless. My point is the first few weeks of recovery are hell, the meds don't agree with everyone, and these difficult emotions bubble up to the surface.

What helped me was the passing of time, keeping in touch with friends and family (it always lifted my spirits),and giving yourself permission to experience and process all of these feelings so you can gradually heal. Take it easy and get the very best nutrition you can manage. Drink plenty of fluids, and know this all will improve. Many of us here know how you feel, and we are here to listen. Please post again soon.

Gentle hugs,

Gayle

[jackieg412]

I agree with Gayle, there is a lot of trauma with this surgery and recovery is long and hard. We're in an instant society. We expect more from ourselves than we can manage. Also, as good as family and friends are at first, they do not understand and get tired. Thankfully most will never go through this ----so vent here. We understand!

[susancook]

FIFA, I had the same emotional reaction after surgery that you describe! My very kind husband had no idea what to do with me. I cried over very small events....like the tears were there just waiting for my emotions to be triggered. Gayle has great suggestions. I'd like to add a few:
- Tell the people that care for you that people on the forum say that it is normal, due to a combination of the enormity of the surgery, the non-supportive time after surgery and your frustration with how you were treated, the drugs you take, pain, sleep deprivation or no period of sleep of 6 hours continuously....and that the crying really isn't about the situation and IT IS NOT ABOUT THEM. Tell them the reaction to your crying that works best for you: like just a quick hug and don't ask why you are crying or whatever works for you. Also, recovery is a good year.....some family/friends think that you should be "normal" after 6 weeks. It gradually gets better over the first 6 weeks, then 3 months, then 6 months, 9 months, one year. Also, sometimes it gets better and then you feel worse...emotions do not just get better every time, so don't get disappointed when you have a setback.
- Do you have someone to talk to that really listens and supports you?
- Don't over think the crying. It just happens and will decrease with time as your pain.
- Reach out to good girlfriends and invite them over to your home....and tell them not to stay too long.
- Get out of the house for even a short while....lunch is great, whatever works for you. Fresh air. Remember a pillow to cushion your back in the car. Of course, you are the passenger.....no driving yet!
- Walk as tolerated every day
- surround yourself with non-toxic people
- is your bed comfy? Favorite chair comfy? If not, change with a topper or more pillows. New sheets. Soft flannel sheets from LL Bean (supima sheets)...think that they have a discount now and always take back returns.
- is your pain being addressed?
- constipated?
- look at self-care options: hair cut, pedicure, manicure, foot and lower leg massage. Do not do a body massage.
- are you taking a nap every day?
- are you eating well? Fresh fruit, veggies, lean proteins
- are you drinking enough water?
- if you have a dog, hug her more!

I promise, promise, promise that life will get better. Give it time. Have patience. Be kind to yourself. Be very kind to yourself.

Gentle caring hugs,
Susan....been there done that, just did that again.....

[fifa]

Hi. Fifa, as rough as that all sounds to me it is like the same journey. I remember just being able to eat a single bit of food at a time.like one grape or a single potato. I was thirsty all of the time. And then it was a single sip of something. Sitting was impossible and I paced back and forth a lot. It will improve. A lot of rest yet. Even if you can't sleep for long. The spinning , I would think is coming from the meds. My surgeon just gave me a 2 mg dose of diazepam , I could not keep it down . Medication can help, but it can also be a trial and error type of thing. For me it is mostly error.

Thanks, Jackie - very helpful. I think we've figured out that not only was I over-medicated, i was completely dehydrated. I'm not using the walker a whole lot these days, so am still kind of unstable without it. I've just never had anything like the vertigo I had there for a couple of days. I mean, I've been "tipsy" plenty and dizzy, too, but this felt more like being almost flung to to the floor. I knew if I didn't get to my knees, I was going to black out. Weird. Happy that is over.

Hope you are doing well - thanks a bunch!
Fifa

[fifa]

Dear Fifa - I am so sorry you are going through all these problems. Some do and some don't -- and you just never know. The one thing to keep thinking of is that you will get through this. And I know you realize that. Just keep thinking it when it the going is rough. I'm one of the ones who had an ileus, and I can't remember if I already told you that or not. I went NPO, not even ice chips, for 5 days after surgery (not counting surgery day). I know it seems like you are without nutrition during that time but they are "feeding" you with the IV. (Sure doesn't take the place of a steak, does it!)

I also went through a time period where the room would spin around when I was lying down in bed, but it was at least a few months or more after my surgery and I wasn't on strong pain meds then... and also many, many times when I lay awake for hours during the night, wishing so much that I could just go to sleep. Sometimes those are med related, I think, as right now I'm having that same problem because my neurologist just added a different medication and if something awakens me at 4:00, or at least by 6:00, in the morning (a foot cramp, almost every night) I cannot fall back to sleep for the life of me. Up until I started this new med I could sleep in until 8:00 if I wanted to. Oh well. (sad face). The main thing to keep in mind is that these things will pass and you just need to be patient. It may be some sort of hold-over from your anesthesia also, or just the trauma of the surgery.

I'm praying that you'll turn the corner soon and get the rest you need, your digestive system back on track, that you'll be able to eat the foods you are craving, and that you'll be back on the smoother road of recovery very soon. I think you've just hit several bumps, the main one being that they did not take care of you well at Barnes and sent you home when they shouldn't have. Take care.

Oh, Susie Bee - could you possibly be any nicer? Thank you for your kind words. (big smiley face)

I've figured out with me (maybe with you and with others?) - it is just the not knowing. I've been driving myself crazy the last couple of weeks wondering "is this normal? Should this be happening? What the h*LL is this all about?" That's why I'm so grateful to have found you all.

I keep trying to tell to myself that this, too, will pass. There are plenty of you all you've "been there and done that" and you all seem to be doing pretty well. I'm controlling and impatient, and I try to work on being a better person, but it seems like Percocet, Valium, and Oxycontin make my bad personality traits worse. LOL

I had surgery November 10th, so I keep trying to tell myself that it hasn't even been a month yet, and I need to just eat, rest, and relax. There's nothing I want to read, no real comfortable position I can get into, and I think I've watched everything that has ever been broadcast on Netflix.

The yoga isn't helping - I think it is the drugs. Someone should do a study on that one. LOL Who needs Zen when you've got Oxycontin? LOL

These are today's complaints and they, too, will pass. You and so many others have been through so much more than what I'm going through. I' sorry to be a whiner. I'm going to post below about "nerve pain" and then try to get some sleep. I'm going through this insomnia thing - it is as if the Percocet wakes me up every two or three hours on the dot and says, "hey, time to take some more of me!" That's kind of different. LOL

Please take care. I hope you are doing well - gentle ileus-free hugs from Missouri to you! We'll have to swap private stories on that one - I have NEVER been through anything like that before. I've got hubby on standby with the Fleet enemas just in case. I seem these days not to be able to tolerate even half of what I could eat before. Oh, and I'm down 24 pounds, but don't know how many pounds of hardware they added.

Take care and get better than ever! (smiles and hugs)
Fifa

[fifa]

Nerve Pain?

Hi, everyone -

Just a quick question for anyone who may have had issues with this. I had surgery on Monday, November 10th, so just shy of a month ago (today being December 6th).

Yesterday and today, everything from the waist down just aches. I haven't done anything in particular any different than I have been for the last month. Haven't fallen, bent, lifted, twisted, etc. I'm walking sort of like I'm supposed to. It's too cold here right now for me to go outside, but I was told to take six or eight five minute walks per day such that it added up to about 30 minutes per day. I'm not doing any sitting really except the occasional trip to the toilet.

Anyway, yesterday I just ached everywhere from about the beltline down. No upper body problems at all. Not that I have any experience with restless leg syndrome, but in my mind that is what it feels like. When I'm lying in bed, I feel the need to keep my feet and legs moving. It isn't really "pain," especially when compared to all the other pains we've all had or been having. This is more like a burning ache. It's different from the "board nailed across the butt," which I've mostly gotten used to. I haven't had the "itchy back" that I've heard some of you complain about. This is just weird - feels like my legs are weak and they just hurt from the hips to the toes.

Any ideas? The pain medicine doesn't seem to help this much, which is why I think it might be nerve pain and not muscular/incisional.

Hope you are all well. Any and all advice/comments are appreciated. (smiley)
Fifa

[PeggyS]

Hi Fifa!
How is your lower body today? I think our nerves & muscles respond in a variety of ways as they're learning to adjust to our new spines.

I'm on a small dose (10mg 1x a day) of gabapentin for nerve pain. It was prescribed in rehab to supplement my pain med, hydrocodone. I get that sudden urge to move my legs and hands while I'm sleeping or resting. It's annoying, not really painfully. I can increase the gabapentin, but I'd rather not - I've heard it's hard to quit.?

Hope you have a good day!

[titaniumed]

The pain medicine doesn't seem to help this much

Our bodies build up an immunity and many that are on their meds realize that they are just SO nasty......This seems to happen around the 6 week mark and then the question arises “How do I get off these meds?” After all, it is a goal. I would say that most 50 yr old adults terminate medications around 8 weeks on average.....this only after reading a million posts. Oral medications are overrated and don’t compare to the injectable meds at the hospital. But we need them.....Our double edged sword.

I ended up at that point and figured that continual usage wasn’t for me so I quit. It took a lot of determination and the pain shot through the roof for a few days. I made an attempt and didn’t make it, called my surgeon and was told to cut the Percoset in half with a knife. A week later I tried again and made it. 03/14/08. It was around 3 days of hell, then started my smoothies and jamming NUTRIENTS and improved quickly. I was taking 5 hot soaks per day in a large deep tub with the water at 106 degres F. I was drinking plenty of WATER, flushing my cells. The hot soaks went on for exactly 3 months.

Many of the ladies here have reported taking Gabapentin. I wasn’t prescribed Gab for my surgeries but had it prescribed for my neck herniation’s years later and felt that it was too strong and didn’t like it. Nerve pain can take a long time to resolve.....These inflamed areas can be stubborn, but they do heal in time.

Always call your surgeon upon cutting medications. Don’t cut medications without permission.

I remember sitting here one day at 4 months and reported not feeling any pain. I couldn’t believe it, it had been decades since I was pain free and it actually took a long time to get used to. The pains did come back and it was a see-saw sort of recovery pushing the limits and triggering off pain and then taking naps to recover. Recovery is about having more better days than bad, and the scales of pain tip in our favor in time. It helps to understand this healing process.

9-10 electrical burning pain should be reported to our surgeons......This feels like sticking your finger in a lamp socket. The sunburn feeling on my hips due to flouroscopy burns took around 2 months.....

It helps to understand the whole process....and its not an easy thing mentally especially after being hit by a train. It takes patience, for sure. That’s why I end many of my posts with....

Hang in there
Ed

[LindaRacine]

Hi Fifa!
How is your lower body today? I think our nerves & muscles respond in a variety of ways as they're learning to adjust to our new spines.

I'm on a small dose (10mg 1x a day) of gabapentin for nerve pain. It was prescribed in rehab to supplement my pain med, hydrocodone. I get that sudden urge to move my legs and hands while I'm sleeping or resting. It's annoying, not really painfully. I can increase the gabapentin, but I'd rather not - I've heard it's hard to quit.?

Hope you have a good day!

My immediate thought was to try gabapentin if you have any.

[fifa]

Dear Fifa,

Things will settle down for you; it's waiting for that to happen that's so darn hard! I just can't believe how soon you were sent home - esp without eating solids & having a BM. I did receive a denial of coverage for my hospital stay from Sat-Monday. We weren't informed, but the dr knew I wanted to go to rehab. That had to be appealed,too. My ins did agree to pay for BMP, after a couple of appeals. Hopefully yours will too! It's unclear how much was actually used.

I'm glad there are people on the forum who can help you through this. I'm offering prayers for your back to heal, your gut to settle down and the correct combination of meds.

Please update us, as you feel up to it. Take care, my friend!

Hi,

I can't remember if I answered this or not and am too tired to hunt it down. LOL You all have been an invaluable to me resource to me and everything has been easier for me because of every one of you! Your prayers are working!

Things do seem to be settling down a bit. Really, all I want to do is sleep or at least lie in bed and play a game or two. My stomach has settled down finally. I still can't eat much and really don't want hardly anything. Hubby will fix a plate of something, not remembering that about a quarter of a plate of something is more than I can handle. I'm taking stool softeners as prescribed once daily, but my old habit of having a daily bm seems to be over. I'm keeping an eye on it, but every fifth or sixth day, I'm taking a Dulcolax laxative and hoping for the best. It seems my habit now is about once a week, which probably makes sense because there isn't much in there to eliminate. Sorry for the "graphic" images. (unsmiley grossed-out face).

I've got a stack of mail on the kitchen table that I haven't touched yet. Reading seems to be difficult for me at present. I find myself reading the same sentence over and over again and it still doesn't make any sense. Maybe some kind of drug-brain disconnect. I have no idea what Barnes will pay for as far as the BMP. I had checked in with my financial person at Barnes (Beverly) a few weeks ago. She said she had not yet received my financial paperwork in the mail yet (I sent it snail mail) but that this was not uncommon because Barnes is a huge place and there is a lot of mail received that has to be sorted and delivered. She asked if I would scan it and send it to her electronically, and I never answered that question, but an emphatic NO would have been my response. Too many people these days (especially in health care) work from their phones, answer e-mail from their phones, etc. I didn't want my full financial forms with income, DOB, SS #, etc. all out there on somebody's phone so they could have their purse stolen and have all my information. I think it is crappy the way the health system works these days, and I'm not taking any chances with my personal info.

Speaking of the health care system, last I heard was that Medicare reimbursements were going to be divided up between the hospitals with the best quality of care. This is too much to go into in this particular e-mail, and others may want to chime in, but basically, if you are a crummy hospital providing crummy service, you'll receive less Medicare reimbursements that you will if you are a top-notch hospital. In my town, where there are two main huge hospitals, plus a children's hospital, plus a VA hospital, plus a Rusk Rehab and a Landmark "rehab" hospital, they are all following "Obamacare," and they all have to send you a survey to fill out after you've had a visit. if you don't receive it, contact the hospital and have it sent to you. Hospitals now are being judged on their quality of care, including their rate of infections, rate of readmissions (like being sent home with an ileus only to be readmitted two days later), etc. They want to know how happy you are with the job the hospital did. If you receive this, FILL IT OUT. The hospitals with the worst ratings someday will be eliminated - who would want to go there? The results are public and just one of the many first steps that hopefully will be taken to crack down on this racket.

Must be time for another happy pill - nothing gets my goat like good people being taken advantage of, being ill informed, etc.

Hope you are well - I hope to call you soon!
Fifa

[fifa]

Hey there FIFA! Glad to see your writing more, that is a good sign. Now on the topic of Nucynta, we have given this particular med to many of our post-op patients and have seen good results. But our patients are not fusion patients. From my understanding from the literature our med reps presented us with is that Nucynta reacts in the body like NSAIDS and aide in the reduction of inflamation while dealing with pain without the addictive nature. We have seen many pain doctors prescribing this med as well and have seen studies where after a certain amount of time it enhance sensitivity to pain (which is weird). It's only been out for post-op pain for about 2 1/2-3 years so there really are not many long term studies on it yet. But if it helps, great!

I understand the waking of the bowels. After my full fusion I did not get clear liquids (other than ice chips) till day 6. I was not on solids returning home and didn't feel like eating till almost a month out. It took a good three weeks before the constipation let up. Heck, this time was a lot less time under Anastasia and my system has finally woke up with the help of mag citrate. So even with less stress it took a week to want food and to wake things up.

It will get easier. I can't fathom being cut loose so fast and then ending up in Boone. Did you have an Ortho while at Boone or GP?

I am praying that things begin to ease up!
(((Hugs)))
Tamena

Hi, Tamena -

SO NICE to hear from you. I'm finding out very little about this drug, so I'm happy to have the info you sent. Thank you! How are you doing, by the way? Are you all fixed up now? I've been praying for you, but for some reason thought your surgery was the Monday after mine (the 17th). My brain has not been the most reliable lately. LOL

No, I called my primary care physician's office and told them what was going on (we've had a 25+ relationship, about 22 of those I worked with him and another 10-15 where I was his patient). Anyway, we know each other pretty well. Told them I was fairly certain I had an ileus an was in enough pain and my belly was so large that I didn't think I could double over to even get in the car. We called an ambulance. They tried to treat me as an outpatient there in the ER, but after six or seven hours of that, it was obvious nothing was going to "move," to they went ahead and admitted me.

Let's just say I'm less than happy with our orthopaedic options here. I might try someone at the University someday, but I doubt it.

I pray everything is going your way and you are doing well. Please keep me posted on your progress.

Also, I meant to ask you this earlier - after your ileus and that, did you find that you had a intolerance for specific foods? I've find very little right now that is satisfying for me to drink, and am basically just drinking water (which I kind of hate). (smiley) I can't drink anything carbonated at all. My beloved Dr. Pepper - how I loved you! (sad face).

Seriously - is anyone out there not able to drink/eat the things they liked before surgery (or perhaps before ileus)?

Thanks. Hope you are taking care and feeling great!
Fifa

[LindaRacine]

Hi Fifa...

A few thoughts...

At UCSF, emails and other electronic communication to and from patients, and any communication containing any personal health information about a patient, are all encrypted, as are all devices that can store data. Email software does not work on our phones, iPads, etc., unless they are password protected. I suspect that's the case for most if not all university medical centers, and hopefully most private institutions. If not, they are not in compliance with HIPAA.

Also, in regard to your bowel regimen, I think you should consider taking both senna and colace daily. I was told to continue them as long as necessary, and definitely as long as I was taking narcotics, even if I wasn't feeling particularly constipated. On top of that, if I started feeling constipated, I would take lactulose. I don't think you want to be going so long in between bowel movements.

Hang in there. It will get easier.

--Linda

[tae_tap]

Fifa,
I am doing really good! I am still taking Senna for the stomach issues because it normally takes me a good three months to get back to normal. Your surgery was so much more of a shock to the body so don't get discouraged. It takes time to build up energy and to get back to normal. There were many foods that also did not agree with me after surgery, including soda of any kind. I was pretty much on apple juice, smoothies, and water.

Walking as much as you can will help to get the system running again too. I am glad to see you on here because that means you are slowly coming along and are about to winthis battle.

Have a great Christmas!

Tamena

[fifa]

I had severe abdominal pain in hospital and at home until maybe day 3 back home.

My abdominal pain was beyond the bloated pain was a very inflamed 'angry' pain. It felt food poisoning like pain and not just constipation related.

Eventually I came up with a theory (this may have been induced by hallucination from pain meds) that my body was over loaded with mast cells from the opiates... and my bowel was inflamed from all the mast cell/histamine reaction.

I wanted to take something for the itching anyway so I made my boyfriend go out and get me benedryl tablets, took 50mg to bed that night and woke up next morning with significantly less pain. Bowel function returned to near normal next day.

Most likely a coincidence, but over abundance of mast cells can cause problems in our body. So worth trying if your intestinal pain feels inflammatory and/or you have skin itching. I'd try before bed though as it can make you drowsy.

It took me a while for my taste buds to return to normal. For a while, everything tasted salty, even steamed veggies that were not seasoned in any way. Still salt sensitive which I guess is a good thing.

I had lots of soups -- only the liquid the first week back. I tried and wanted to eat solids but my body wanted nothing to do with it. Soup and smoothies kept me going. Also prune juice.

Hi,

I hadn't thought about the mast cells and the Benadryl, but that sounds like very much worth checking into. I noticed something tonight, which may or may not be related. I've had some pretty awful acid reflux, which I typically treat just as needed with over-the-counter tablets of Pepcid Complete. I don't have the bottle in front of me, but I know that it is a combination of famotidine (Pepcid), calcium, and magnesium. It's claim to fame (if I remember correctly when it first came out) was that it gave you the long-term relief of a Pepcid plus the short-term relief of a Tums or Rolaids. Anyway, I've been using the stuff for years.

I've noticed the last couple of nights when I've taken it, I start with the severe stomach pain and cramps, which brings on the tears, and then this horrible ache (deep ache) starts from about the waist down and goes down to both feet. It feels like what I suppose "restless leg syndrome" feels like. I can't stop moving them. The pain just kills and there isn't anything to do about it. Oh, and they also make me feel like I'm going to be sick. I've just started researching on the internet, but one thing I found was that that is a reaction to Pepcid Complete and the muscle relaxant I'm taking (Tizanadine), which is Zanaflex. How stupid of me - I always check for drug interactions with prescription meds, but I rarely look into "Gee, should I take my Pepid Complete with these muscle relaxers???" What. An. Idiot.

Anyway, I don't know if that is what the problem is or not, but I'm about done. I'm not trying to be a hero or anything, but I'm just pretty sick and tired now of all of this. One drug relieves your pain but then you can't poop. Another drug relaxes your muscles, but makes everything you eat taste like alka seltzer. We've cut way back (WAY back) on the meds that I'm taking, with the doctor's approval. I don't feel like I'm getting the nutrition I need to heal if I can't eat anything. If my gut stays so full of whatever that I can't put in any good stuff, it just seems silly to me. Unfortunately, because mostly the drugs and being so loopy an unstable, I'm not walking as much as I should, and I KNOW I need to that. I'm tired of sobbing all the time for no reason. Just the other day, I opened a bag of teenie dog biscuits for teenie dogs called "buddy biscuits" or something like that. There are about a thousand tiny treats in an average size bag. Anyway, I ripped into them, not realizing that my husband had already opened them. I had g-damned buddy biscuits EVERYWHERE. The water dish was full of them. They covered the kitchen, the living room, and the hall. I had to get my husband to come clean that up for me - can you imagine picking up a thousands damned biscuits the size of a nickel with a reacher/grabber? I was just so upset. These are the things that, a month or two ago, would have reduced me into hysterical laughter, racing the dog to see who could grab how many the fastest. LOL So, suffice it to say, I'm tired of being sick, feeling depressed, being worried, and all the rest of that crap. I want to see how many of these meds I can get rid of and just maybe use PRN instead of around the clock. My dad is having surgery on the 16th, and I just want to be able to hang with him if I can. We'll have walker races down the halls or something. What I'm trying to say is that something needs to give and give SOON, because I'm at that stage where I can't believe that I feel this way and I'm wondering if I made the right decision. I just desperately need to move forward.

Thanks, you all, for letting me vent. You all take care - sending you giant hugs from afar!
Fifa