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

[springchicken]

Hi Fifa!

Unfortunately you are probably in some terrible feedback loops. Like, the Zofran causes terrible constipation, constipation causes nausea, and then going on new narcotics for the first time also causes nausea, which makes you need more Zofran. ANd straining to go the bathroom flares up the back pain, etc.

So I can just speak anecdotally, but I'll tell you what I experienced.

At the start, I was on Oxycotin (this is the extended release) twice a day 20 mg each time. And I was on Dilaudid 4 mg every 4 hours for the break out pain and Flexeril (a muscle relaxer). I was spaced out beyond belief! I looked at my pain journal and at 8 weeks I was still on Dilaudid and Oxy, but off the Flexeril. And I was weaning off of everything, but very slowly. I spaced the Flexerils out so that instead of every 4 hours, it went to every 6 hours, etc. I starting cutting down the Oxy from 20mg, to 10 (can't cut these extended release in half though). And so on. It went this way for me for a while. I went off the Oxy first. And then I was still on Dilaudid for months, but at tiny doses. I had replaced most meds with Tylenol.

So Tylenol causes you nausea? I've never heard of Tylenol by itself (without codeine or in Percocet) causing upset stomachs... I know it affects the liver. Is it possible you are allergic? Might be worth exploring. Maybe someone else could weigh in on this. I just wouldn't want you to go on it if you were having some strange reaction. Percocet makes me very nauseous, however. All the narcotics did when I first went on them. And after months of being off them, I took Oxy and Dilaudid (separately) for bad pain days and both made me nauseous.

Ok, sorry to babble. I just empathize with the nausea because I have a very sensitive stomach. I will say that once I was on the narcotics for a while, my stomach problems went away, but they would flare up every time I had to cut the dose. It sucks, but tapering up and down helps. This was only temporary, too, however.


I had persistent pain after the surgery for months. I still do. I have trouble sitting. It's some sort of nerve problem. So that's why I went on the gabapentin. I would say first find the pain killers (narcotics) that work for you, becuase you still have surgical pain. And if you need to supplement the narcotics, try to decide if your pain is muscle related or nerve related. If its spasms, the muscle relaxers would help more. If it's numbness, tingling, sharp pains, burning, then maybe gabapentin is worth a try. If you do go on gaba, start low, and build up a tolerance. It can cause slight stomach problems and dizziness, but it you increase slowly you will be ok. And the side effects go away with time. It is much easier tolerated then narcotics.

I hope that helps. Please feel free to throw any more questions my way. I'm sure everyone finds unique combos for them.

Oh, and thanks for the good wishes! My xrays look great, mri looks fine. It's one of those catch-22's. I'm happy not to have obvious problems showing up, but frustrated that my pain source is indeterminable at the moment! I think the problem is my SI Joint, and I'm getting an injection there soon.

_springchicken

[fifa]

That was the best message I have ever seen about poop! You should be a writer, because your descriptions were brilliant!

I am SO sorry you have had to go through all of this. Of course you feel down, you have been dealing with 2 major medical issues at the same time. Have you thought of contacting a GI doctor or pain management doctor? I know you are getting off the pain meds, but seems to me you still have a lot of pain. There are many options out there for pain and you should not have to suffer or choose between your back or your bowels. No pun intended (initially), but you have to make a big stink with the doctors about this!

As someone who's surgery is coming up, I really appreciate your honesty and advice. Unfortunately you have had to go through this horrible thing, but hopefully your sharing it will prevent others from experiencing it.

Big gentle hug!

Hi, there -

Yes, my next stop is with the pain management doctor here in town, who is supposed to be wonderful. I just had colonoscopy/upper endoscopy in April. I have them every two years because I have a four-generation colon cancer history on my mom's side of the family. I'm confident the GI will tell me it's all the meds I'm taking, and I think the person to straighten out the meds would be the pain management doc.

I know it has only been eight weeks, but I just want to start weaning down off some of this stuff and trying to get a life back. I don't feel like doing the walking I'm supposed to be doing. I'm dizzy and confused quite a bit. My stomach will only tolerate a few things, so I've lost 40 pounds and have zero energy. So, I think the pain doc is the way to go. I'd like to get straightened out before I see the ortho surgeon in April or May. For no reason other than just not feeling/doing as well as I thought i would be at this point, I'm afraid to see the ortho surgeon for anything right now because I'm afraid he's going to tell me something is screwed up. My legs go numb after sitting just a few minutes. I have a pain in my left thigh in exactly the same place every time that doesn't happen very often, but feels like someone is poking an ice pick into my thigh. I have some occasional non-painful "crunchy" going on in the tailbone and hear an occasional tiny pop in the spine - I have no idea if this is normal or not but I'm too scared to call and ask.

So yes, pain doctor is the next stop as soon as hubby can drive me down there. I can't drive yet while still on all this medicine.

Thanks for your nice reply. I laughed out loud at you "big stink" comment. (big smiley) At one point in my long poop post, I wanted to say that I was in so much pain with that that I didn't really give a crap or a sh** if I messed up the fusion....that's how much pain I was in. However, I already couldn't give a crap, but I thought that was too easy of a joke. LOL Yours is much better.

Thanks again - take care of yourself and stock up on every kind of laxative preop. No one wants to go to Walmart for mag citrate at 3:00 a.m. It's not like it will hit you during normal business hours..... LOL

Big hugs,
Fifa

[fifa]

My Daddy Went Home Today!!!!!

Hi, everyone -

For all of you who were praying for us, I just thought I would let you all know that my dad called me from his brand new recliner in their brand new apartment today. He was discharged this afternoon!! The discharge planner/care coordinator took my folks over to their apartment just to make sure that everything was accessible to my father so he could safely be discharged home rather than having to go to a nursing home or assisted living situation. But for a couple of throw rugs (bath mats - one in front of each shower), the apartment passed muster and dad is free to return home, of course with all kinds of restrictions. He'll never walk again without the walker, but that sure beats a lot of the alternatives. Since it was so cold here today, snowy/rainy, etc., the care coordinator told him to stay in his recliner...she would go back to the hospital and fill out all the necessary paperwork, and they would pack up his belongings and let mom come over later to sign him out and pick up his things.

I couldn't stop crying when he called, but you all know I cry quite a bit anyway these days (LOL). Anyway, I thought you all might want to know that at least one problem is solved for now.

Thank you all who kept us in your thoughts and prayers. I have no doubt he got to go back home because of all the prayers and good wishes being sent his way. Thank you.

The big dummy had a five-level cervical fusion (with rods and screws) and is taking one Percocet at bedtime to help him sleep. No pain whatsoever. I told him how very jealous I was. (smiley)

Anyway, thank you all for your concern. Hopefully, my own mood will improve now and I can worry a little less. It is nice to finally have some good news.

Hugs and love to all of you,
Fifa

[fifa]

OH yes I agree with springchicken.

Zofran for me works but with bad side effect -- gave me the worst constipations ever. This was in pill form... I can't even imagine how bad it'd be if I was given through IV.

I had my nurses informed well on which anti-nausea to give me, except the lazy one who ended up wasting a syringe full of zofran because she just didn't listen (or would leave before i had a chance to tell her which would only take extra few seconds)

I think I got reglan in my IV I don't think it caused constipation -- it comes in both IV and pill form.

Thanks for this, M&M. I honestly had no idea about the Zofran causing constipation. Yes, I'm still on it because I'm alternating the Percoset right now with the oxycodone, sort of trying to figure out not only which one works better but which one makes me less crazy. I took my first oxycodone tonight after having been on Percocet for a week (we ran out of oxycodone over the holidays and had to have my local primarily care physician graciously write us a small script for Percocet to get us through until the script for oxycodone arrived in the mail). I just can't take the Percocet without taking something for my stomach. Anyway, less than an hour after taking my first 5 mg oxycodone in a week, I was confused, wobbly, wandering around, and sobbing. I had quite a bit of pain (hubby woke me up in order to give me the oxy as we are following a very tight around-the-clock schedule so I don't get behind on any of my meds. You all know what happens when the pain gets ahead of you).

I'm measuring my intake and have been since the second or third bout of fecal impaction. I have a giant University Hospital cup and straw combination that holds 32 ounces. I'm drinking about six of these a day now. It seems like we're making iced tea just about hourly. I'm still not eating much, but I'm drinking everything I can find. I especially am fond of chocolate soy milk, and usually have at least one glass of that in a day (it is packed full of protein and I just love it). I've stopped drinking coffee for the most part just because my stomach has been a mess since I left Barnes, so I typically am now starting my morning with a cup of hot tea with plain soy milk and just a touch of sugar.

Something happened while I was in Barnes and had the ileus. I can't tolerate sugar really much anymore, or at least not in great amounts. I tried a piece of fudge over Christmas and had to take Zofran shortly after. One Christmas cookie caused the same problem. If any of you are familiar with the Missouri Baking Company in St. Louis on "the hill," we go every year to buy cookies for Christmas gifts for family and friends (and ourselves, of course). They are tiny shortbread cookies of every flavor, biscotti, etc. They are tiny and packed full of butter and sugar, and are the best things ever. One cookie made me sick enough to take a Zofran. Lastly, I've mentioned this before, I can't drink anything carbonated since I left Barnes.

I'm blaming all the meds for all of my troubles at this point, and just want to get off everything and see what the new normal is. There doesn't seem to be much point in seeing a whole bunch of specialists now while I'm taking all of this.

I'm only taking the Zofran as needed, which is twice daily while I'm on the Percocet. So, I'm happy to know it causes constipation and I will be careful using it. Thank you so much for this important information - I had no idea. I haven't been well enough until lately to use the laptop and look up all of this for myself.

Hope you and yours are well - thanks again!

Big hugs,
Fifa

[fifa]

Hi Fifa,
I'm so sorry you're having such a terrible time. I can definitely relate to the bowel troubles. I noticed on another thread that you were on anti- nausea drugs at one point? Not sure if you still are but they are incredibly constipating. Muscle relaxers can be too. I know its so awful having to choose between pain or all the side effects from the meds. But I found as I tapered off even just a little it helped so much. Mirolax was my godsend. Took it twice a day. It's gentle but really works.

Anyways I'm actually typing this as I head to my one year follow up with my surgeon. Wish I could say all is well but Im still dealing with significant pain. I'm on gabapentin which has also been so helpful.

Good luck! Hang in there. You will not be this way forever.

Sorry - before I hit submit on that last post, I meant to wish you good luck with your one-year follow up. Hooray for you!!! Hope all is well - will be praying for you!

Hugs and big smileys,
Fifa

[fifa]

Hi, there! (for spring chicken and green M&M)

I think the bowel troubles are so common with all of us, truly. I just wasn't at all prepared for that. My lord, the pain/cramping I had when it started...it was like my body said - "okay, this is coming out out NOW," but it was too big to pass. I think half the neighborhood heard me screaming, plus then the bending and just a tiny bit of twisting to try to remove it - my back was just killing me. I'm glad it is over - at least, I pray it is over.

This whole time, eight weeks, I've been having medication trouble. I was originally sent home with oxycodone 5 mg take one or two every four to six hours (if I remember right). I was doing fine with it, sleeping a lot, doing some crying, but doing okay. I keep saying oxycontin, but it was oxycodone. We had a script that was to last a month, so we called ahead and had the next script mailed to us. When it came, it was for Percocet, which is actually the same 5 mg of oxycodone plus 325 (if I remember right) of Tylenol.

Maybe a month before surgery, the ortho folks told me to stop taking Motrin because it would inhibit the fusion. I started taking Motrin over 20 years ago because that is what the ortho group here always prescribed for back pain. It helped my pain SO much better than Tylenol, so that is basically the only pain med I've ever taken on a regular basis. There have been several times over the years that I've taken Tylenol or another product with Tylenol in it, and came to find out that Tylenol really upsets my stomach.

So, when we received the script for Percocet and filled it without knowing it had Tylenol, it wasn't long before the nausea set in. I couldn't figure it out. I had already been having bowel trouble and truly wasn't eating much at all. I had my typical acid reflux, which I get a lot when my stomach is empty, but this was full-on "sleep with the trash can next to the bed" nausea. When we figured out it had to be the Tylenol in the Percocet, we called the ortho folks and they called in a prescription for odansetron (Zofran). I've been taking it twice a day ever since because it really does help with the nausea I've had from the Percocet.

Yes, I've truly had more trouble with stomach/bowel issues than pain, which is not to say I haven't had significant pain issues. I guess the stomach stuff was unexpected, so somehow in my mind, it was worse and I just wasn't prepared. Plus, it is completely embarrassing for me to have to ask my husband to insert a suppository or give me an enema.

I would very much like to ask you a question, please. I literally have about 15 scripts on the kitchen counter...three pain pills (I'm only using the oxycodone), two muscle relaxants (Valium and Tizanidine), a script for Nucynta (a newish pain med that I'm afraid to take due to contraindications - it says not to take it if you have an ileus, so after having an ileus plus four impactions, I don't want to even try it), and a script for baclofen which I'm not taking and a whole bunch of gabapentin (Neurontin) which I'm not taking. It just all seems like too much for me...for someone who hasn't had anything but Motrin for 20 years, having 15 prescription bottles on the kitchen counter is a little daunting, and as crappy as I've been, I've been trying to do research and try different combinations of things. For instance, the Tizanidine (Zanaflex) which is for muscle spasms...in the side effects for this med, it says, "may cause back pain and increased muscle spasms" (constipation and stomach trouble, too.) What the ever-lovin F? Valium, also for muscle spasms, may cause muscle spasms (under side effects) and may cause trouble urinating (there's my decreased urinary stream, by the way, plus probably the horrible bed spins I had more than a month ago (basically when I started taking it. Also, Valium causes depression, and it seems like a side effect for absolutely everything I'e been prescribed causes constipation. I have baclofen, another muscle relaxant, which says it probably shouldn't be taken with other muscle relaxants. Then, I have the Neurontin (gabapentin) - which may have interactions with antacids (aluminum and magnesium), and with hydrocodone.

Serious question, everyone - what do you all take and how do you manage the side effects?
And, to Spring Chicken in particular (and anyone else who has tried the gabapentin) - did it work for you?

I'm finding that the opioids just screw with the part of my brain that cares that I'm having pain. Nothing I'm taking is reducing the muscle spasms. My back pain is seriously manageable (I'm at about the same pain level as I was preop except there are a whole lot of things that hurt when I do them now (so I'm not doing them) and there are several things that used to kill me that aren't bothering me at all. It's a fair trade so far. I think I could manage the back pain if I could just get rid of the "spasm" part.

Do you all have any suggestions of any combinations of meds that worked for you? I'd like to find something that lets me have a little bit of a clear brain so I can work, something that doesn't make me immediately want to fall asleep, something that doesn't make me sob, confused, or wake up not knowing where I am). I would just like to know what worked for some of you.

I really can't take Tylenol, but believe if I continue the Zofran twice a day like was prescribed, I could probably tolerate it.

Thanks, everyone, for bearing with me. I hate drugs and really don't want to take anything, but obviously have to take something for the pain/spasm.

Big hugs,
Fifa

[ksmom0611]

That was the best message I have ever seen about poop! You should be a writer, because your descriptions were brilliant!

I am SO sorry you have had to go through all of this. Of course you feel down, you have been dealing with 2 major medical issues at the same time. Have you thought of contacting a GI doctor or pain management doctor? I know you are getting off the pain meds, but seems to me you still have a lot of pain. There are many options out there for pain and you should not have to suffer or choose between your back or your bowels. No pun intended (initially), but you have to make a big stink with the doctors about this!

As someone who's surgery is coming up, I really appreciate your honesty and advice. Unfortunately you have had to go through this horrible thing, but hopefully your sharing it will prevent others from experiencing it.

Big gentle hug!

[green m&m]

OH yes I agree with springchicken.

Zofran for me works but with bad side effect -- gave me the worst constipations ever. This was in pill form... I can't even imagine how bad it'd be if I was given through IV.

I had my nurses informed well on which anti-nausea to give me, except the lazy one who ended up wasting a syringe full of zofran because she just didn't listen (or would leave before i had a chance to tell her which would only take extra few seconds)

I think I got reglan in my IV I don't think it caused constipation -- it comes in both IV and pill form.

[springchicken]

Hi Fifa,
I'm so sorry you're having such a terrible time. I can definitely relate to the bowel troubles. I noticed on another thread that you were on anti- nausea drugs at one point? Not sure if you still are but they are incredibly constipating. Muscle relaxers can be too. I know its so awful having to choose between pain or all the side effects from the meds. But I found as I tapered off even just a little it helped so much. Mirolax was my godsend. Took it twice a day. It's gentle but really works.

Anyways I'm actually typing this as I head to my one year follow up with my surgeon. Wish I could say all is well but Im still dealing with significant pain. I'm on gabapentin which has also been so helpful.

Good luck! Hang in there. You will not be this way forever.

[fifa]

Fifa's Poop Thread - WARNING....LANGUAGE MAY BE TOO DESCRIPTIVE FOR SOME, SO SKIP IT

Hi,

You should know that in the eight weeks (today) since I've had surgery, I had one ileus which required a three-day hospitalization to fix, plus since then, have had four separate fecal impactions (also called bowel obstructions). Wikipedia has a pretty good, not so gross description, so I would suggest going there if you would like to know more. What follows is my story, which is obviously biased and may be too much information and/or too gross for some.

An ileus is basically when your little segments of bowel stop moving. Your bowel is kind of like an earthworm - it moves in segments and your waste moves from segment to segment until it reaches your anus. When you get an ileus, it is usually due to anesthesia....your little segments don't wake up very quickly after being asleep during surgery. That's why you can't have any food or anything until you start passing gas and your segments began to wake up and start moving your waste toward your anus.

A bowel obstruction or fecal impaction is a completely different thing. With this problem, your little segments of bowel keep everything moving toward the rectum. The problem is typically there is not enough (usually) water in your bowel to keep everything slicked up and movin on out. So, everything starts compacting together typically in your rectum and up to your colon, and it keeps packing and keeps packing and doesn't really stop, even if you aren't eating anything. This waste that is accumulating I have nearly no description for - it it like Quickrete (concrete mix) that someone has put not quite enough water in, but it has started to set up and take the shape of whatever container it is in. Sandstone may be a good descriptor - I'll have to think about that one. LOL It is hard, gritty, sticky, dry, and nearly impossible to break apart once it is packed down. It packs down so hard that the colon just keeps expanding to accommodate the ever-increasing volume of waste. The volume of waste contained there cannot possibly pass through the anus until it is broken up. Should this happen to you, you should go to an ER and tell them you have a fecal impaction. Trust me, they are used to it and will be so nice to you - they know how embarrassing and uncomfortable it is.

This happens a lot to people on narcotics, the elderly, and people who don't eat enough fiber, don't get enough exercise, and/or stay adequately hydrated. Most people end up in the hospital where they are "manually disimpacted," unless the situation has grown so large that surgery is needed. There is no way for this giant mass of feces to pass other than to break it apart while it is still inside the rectum and remove it piece by piece. One of the big problems is that your body still tries to expel it, so there is a lot of pain, cramping, and bloating, and frankly, the compacted mass of stool is just too large to pass through the anus, so it just sits in the rectum and grows larger and harder and more painful. You have an incredible urge to defecate and cannot. This is by far the most painful thing I have ever experienced, especially with an extremely fresh lumbar surgery and back wound.

We tried enemas, suppositories, laxatives, and everything to get this to pass, but it quickly became obvious to me this was too large to pass.

One of the reasons I haven't posted much here and have been feeling so awful is that I've manually disimpacted myself four times now. Had I known the extent of the obstructions, I would have never attempted this myself. I just kept thinking "how much more can there be????" I knew something was wrong with the first episode. I felt bloated and sick, and felt like I had to "go," but couldn't go. Then, the cramping started and nothing was happening. Due to being fused to the sacrum plus pelvic fixation, I couldn't really figure out what was going on down there cause I can't really reach my "rear bits." Let's leave it at that. I weighed myself before the first episode. It took 5.5 hours to get everything that was in me out of me. After resting a bit when it was all over, I weighed again. I weighed 7.5 pounds less than what I did when the episode started. No joke - got the pictures of the scale to prove it. Two of the other episodes came on so hard and fast that I didn't weigh myself before. The last episode, I weighed about 4.25 pounds less after the disimpaction.

I think I'm not doing so well at present, eight weeks out, is that I had to bend and twist a little too much to try to pry everything out of me. This wasn't easy and was painful not only because of the impaction but because I had to contort myself in ways one shouldn't do after a lumbar fusion. Your bowels are so close to your spine, when they fill up with waste, the pain from both your fusion and your over-full bowels is just excruciating. Oh, and by the way, I was on a prescription stool softener twice a day since November plus was using Ex-Lax every other day or two to try to make something happen. The whole time, it felt like something needed to happen, but nothing every did. We had Dulcolax suppositories on hand, which saved my life, plus Fleet enemas. I keep Preparation H on hand because I have an external hemorrhoid that flares up every once in awhile. I had stimulant laxatives on hand as well as stool softeners, plus the prescription stuff I was sent home with from Barnes. The enemas and suppositories softened things up to where pieces could be removed with my lubed gloved finger and a box of Q-tips, but the stimulant laxatives kept everything going toward the rectum, which may have been a mistake. I would have liked to have had a break during that first five and a half hour episode. Anyway, it finally cleared. It was about three days before I did anything other than take meds and stay in bed. I was in severe pain and exhausted.

The best way (and I'm sorry to be graphic) to explain this is to tell you it was like passing a ten-pound sack of baking potatoes one at a time, with all the cramping, straining, and yelling like someone in labor. This is about the size of the feces I was trying to pass. I highly do not recommend this. I probably should have gone to a hospital to have this done, but I've seen it done, and I thought surely I could do it myself...that it wouldn't be that bad. Had I known it would be 5.5 hours of labor pain, I would have gone. The other three episodes were not as bad as the first, but the next one was a four-hour episode and the last one was about two and a half hours. I just kept thinking "How much longer can this go on?" I mean seriously, I've been eating next to nothing. I've lost 40 pounds. I couldn't believe there could be that much stuff in there - all I'd been eating was fruit packed in natural juices - no sugar or anything bad. Not a Christmas cookie, a Thanksgiving turkey dinner.....I mean nothing. It was Dole fruit packs and chocolate soy milk and iced (and hot) tea.

WARNING - don't ever try to do this yourself. Just go to a hospital. It happens all the time. Ladies, you stand a really good chance of creating a hole (fistula) between your rectum and vagina, plus you run the same risk as a man in that you also risk tearing your colon or rectum, and again, you don't want any of that waste going into your abdomen. That's called peritonitis, and you don't want it. It is often not survivable.

So, that's what I've been up to and why I think I'm exhausted and feel lousy. I called the ortho folks and they recommended laxatives. It was a holiday week, so I couldn't get my primary care physician.

My advice to all of you is the same stuff being said over and over in this forum. Eat right. Get plenty of fiber. Rest. Drink plenty of fluid (measure it to make sure). In fact, have someone keep records of everything if you are too drugged to do it yourself. You need to know how many days it has been since your bowels have moved, and frankly, I wouldn't let more than a couple go by before intervening with something. Have a house full of laxatives, and I mean different kinds of laxatives....I like Peri-Colace 'cause it combines stool softening with stimulant. The Dulcolax suppositories are great. Fleet enemas can't be beat. Keep a couple of bottles of mag citrate on hand...they work SO fast. And, you'll be pretty sore after trying to pass literal fecal footballs, so I highly recommend Prep H for the swelling and pain. If you didn't have a hemorrhoid before, you will most likely have one after all the straining, and it will be ANGRY. We also have a warm water bidet, the Japanese kind with unlimited hot water, and this went a long way into helping me break this stuff up and ease the pain. We've used Charmin wipes for years, and those are always great to keep on hand.

If this post offends anyone, I apologize. I just keep seeing these questions about "what do I need to stock up on before surgery," and lots of different types of laxatives would be my best answer, plus nitrile gloves and lubricant.

Lastly, I've ditched the prescription stool softener that Barnes gave me. I'm taking two tablespoons of Milk of Magnesia every day, and am no longer having any problems. In fact, I may cut that dose in half because I'm going a little too often now.

Happy pooping! May you never get an ileus or impaction - that is my prayer for you all.

Fifa

[fifa]

Hi Fifa!

You've received a ton of good advice!!
Your plan for Christmas sounds just right - good for you! I decided not to write Christmas cards this year, so I admire you for doing that. I get a little twinge of guilt/ regret every time I open a card, but it goes away quickly!

I got busy & filled out my questionnaires - thanks. My responses for BJH were on the opposite end of the scale compared to my responses for St Louis Rehab!

You mentioned pain in your legs & having to keep moving them. I don't have the pain, but my legs keep twitching while I'm trying to fall asleep. It just started a few nights ago, so I sure hope it's temporary. I brought up heartburn to my family dr & he said it was related to constipation. In fact, he seemed to think everything was b/c of my constipation!

We'll all be keeping you & your dad in our prayers. Please remember not to over-do at the hospital.

Hi again, Peggy -

I'm trying to respond to everything everyone has said, and I think I've missed a few (including this one).

I've not received my questionnaire yet from Barnes. They owe me two - one for the preop visit with the myelogram and all of that, and a second one for the hospitalization. I've received a bill, though. Nothing for the BMP on it, so I don't know if that will just come later or what. Boone has already billed me for the second hospitalization for the ileus. It's a $300 copay that I owe them and I'm going to go up in person with my "evidence" and they're going to eat that $300. If they want it, they can get it from Barnes, since Barnes should never have discharged me in the first place and I have the discharge xrays to prove it. It's not like $300 is going to break the bank here, but they need to be more careful and step up their game. Those kinds of mistakes kill people. When the colon perforates and all that waste enters the abdominal cavity, it is nearly impossible to get rid of. At the very least, Barnes needs to assign someone from medicine to handle the things that the ortho group can't/won't handle. The ileus was stupid and completely unnecessary, and I'm still ticked about it (mostly the five days of pain I had to live through before Boone fixed it). I'm about done complaining about it - I just can't believe, after all the wonderful things I've heard about Barnes on this forum and elsewhere, that that happened.

Take care - talk to you soon!

Hugs,
Fifa

[fifa]

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.....

Hi, Susan -

I think this is one of the posts I responded to one evening that just disappeared. So frustrating.

You are so incredibly kind, honest, and thoughtful, and I appreciate your posts so much, especially with all you are going through. I agree with you - I think this in the end will end up being a setback, but right now, it feels like it is always going to be this way. Yes, thanks for asking, I have a great support system and have explain to all of them I have only two moods these days....I'm either a total "witch with a b" or I'm a sobbing mess, and none of it has to do with anyone, and they just have to let me work it out. Other than handing me a tissue while I'm sobbing, there's really nothing anyone can do.

I'm napping and probably napping more than I should. I'm walking, but not as much as I should be. I'm going up and down the stairs here because it is too cold to be outside plus the stairs have handrails that I can use. I've found the walker to be a bit of a joke in our 1970s house - it doesn't fit through a lot of the doorways, and I can't pick it up and jerk it around to try to get it through sideways...not worth it. I'm not supposed to be lifting or twisting anyway. I'm better off without it and just doing my "hobo stairmaster" as much as possible. Part of going downstairs is to let the dog out, so I'm getting some fresh air and spending time with my best pal, so that's good.

The "no" answers to your questions above is no, I don't feel like my pain is being addressed adequately at all. The drugs I'm taking just simply change my mental status. Frankly, I'd give anything to just be taking Motrin and leaving all of this crap in a dumpster somewhere. The pain medicine makes me sleep, approximately two hours at a time, and then the insomnia kicks in and I do my stairs with the puppy or just lay my fat behind in the bed. My bed is comfortable for the most part - I'm just too uncoordinated to log roll around on it. It's a tempurpedic and not very firm at all, so it's hard to roll over when the mattress gives when weight is put on it.

No, I'm not eating well at all. My pain medicine was changed over from oxycraptin to Percocet, which has Tylenol in it, which I can't take. Since the script was already filled by the time my hubby brought me a pill and I realized what it was (and that I couldn't take it), we were stuck with it. So, the ortho group wrote me a script for either Reglan or Zofran (an anti-emetic and I cant remember which one it is) to cover the nausea that Tylenol creates. I'm finally drinking enough fluid now that I'm measuring it, and i hug my puppo as much as he'll let me. He hasn't left my side since I've been home. It's killing me that I can't pick him and hold him as was our habit before this stupid surgery. He sits at my feet and stares at me (his signal that he wants to be loved on) and I can't do it. Hubby will pick him up and put him in my lap, so at least that's something.

Things are getting better but too slowly for my taste. I'm impatient. I just didn't think for a minute it would be like this. When you read the poop thread once I get it posted, maybe things will make more sense. I wish I had been better prepared for constipation before I got home. The bowel obstruction/fecal impaction is by far the worst thing I've ever experienced, and that includes this surgery and the pain involved with this surgery.

Hope you are doing well. Thanks for asking such great questions and giving such good advice. I appreciate your input so much!

Gentle hugs,
Fifa

By the way, I laughed at your "been there, done that, just did it again" line. Please, DON'T do it anymore, okay? (smiley)

[fifa]

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!

Hi, Peggy -

Does the gabapentin/Neurontin seem to be helping your nerve pain? My physician has suggested this to be and wrote the script, but I didn't fill it. I didn't fill it because every time I talk to my primary care physician or the folks at Barnes, they just send another script for something different. I already had two scripts i was taking for nerve pain before they sent the Neurontin, so what's a girl to do? LOL

If the gabapentin helped you, I'm happy to try it. This achey stuff is crazy - won't let me sleep. I can't sit on the toilet long enough to urinate without both legs going to sleep, and then the ache afterward lasts for hours.

Honestly, I'm beginning to think I've got a screw up against a nerve root or something. I can't make any sense of it, and I don't see Dr. B until April.

What have you found to be helping you the most? You had twice the surgery I did, but I had a lot more BMP than you did. I think your rehab really helped you. I wish they would have sent me (and gotten rid of the ileus before discharge, but that beaten horse is pretty much dead at this point). LOL

Take care.
Fifa

[fifa]

Hi Fifa...

I'm so sorry this has been so difficult. I think many of us can relate. I certainly can. Hopefully, when you look back on this time, you'll realize it wasn't nearly as significant as it feels right now.

Up until my surgery in 2011, I had only had a tiny bout of depression during a serious illness. The depression in 2011 was pretty deep. I really felt like I didn't want to live. It's ridiculous when I look back on it now. I had zero back pain. I did have hip pain (from trochanteric bursitis) and a lot of numbness and tingling in my legs. I couldn't lie down for more than a few minutes for about a month. I was taking several narcotics, though I look back now and know that they really weren't helping. It all added up, and I was pretty miserable.

You will get past the issues that you have now. Hang in there.

Hugs!
--Linda

Hi, Linda -

Thanks for your nice note. I appreciate the encouragement! I've been having the same thing....the not wanting to live to thing, but I'm not suicidal (don't hotline me - I don't have a plan and I don't want to harm myself or anyone else). LOL Honestly, I'm convinced it's the drugs. I'm not a depressed person by nature. In fact, I'm a big jokester who likes to have fun, and the darker the humor, the better I like it. (smiley) Part of it is that I thought I would be farther along right now than I am. A HUGE part of it is that I've had so much bowel trouble and the pain that goes with that, I've had to take the pain meds, which is what is causing the bowel trouble, and it has just been this endless cycle of stress that's been hard to take. I'm posting my poop thread below, and then I plan to post the details of my last day at Barnes Hospital. I just haven't felt like posting lately. I have to type with one finger on my tablet, and the laptop has been to heavy for my overfull belly. I've been just taking meds and staying in bed - I haven't had the energy to walk like I need to be walking, but I am climbing at least 28 stairs each day, some days more than once, so that's something. That and walking from bed to kitchen and bed to bathroom has been it. If I felt like doing more, I'd be doing it, but right now, even sitting on the toilet for five minutes puts both legs to sleep, and they ache for hours afterward (no idea what that's about). It's like when your foot goes to sleep, and it starts tingling when it wake up, and then comes the ache....I don't get the tingling, but I get the ache, and it lasts for hours.

I totally relate to what you said about that it seems significant now but won't later, and I agree. Hubby and I have both had some awful stuff happen to us (or so we thought at the time), and you wouldn't believe how many of those "terrible" things turned out to be a blessing in the end. Like I said, I normally am a super-positive person and constantly look for something positive in the most negative of situations. Truly, I believe the oxy-craptin has taken my ability to do this away. I sit here and sob some days over nothing. Nothing has happened and I'm not in pain at the time, but I'll sit here and cry for an hour for no reason. It's maddening.

My pain is improving and I'm weaning down from the meds even though it has only been eight weeks. It's just getting harder to deal with the "crazy" that seems to be my reaction to (I believe) oxycontin. It's that or Valium, or one of the other anti-spasm who knows what the hell I'm taking. What I know for sure is that someone who had such a minor surgery compared to most of you, and someone who is taking as many different drugs as I am taking, I feel pretty positive in saying I should be feeling much better than this. I may not understand the nature of this pain, but it seem to be breaking through about eight different scripts right now. Hubby is keeping the log and I'm getting everything I'm supposed to be getting right on schedule, but I can't seem to shake the pain. In trying to be positive, I guess this is just going to take longer than I thought. I truly thought I'd be back at my desk this morning. That, the pain, and my dad's health has just truly been too much to bear. I know I'll get through it, but right now it just sucks. (smiley)

Thanks again for your reply - you always have the best advice and I appreciate it.

Hugs!
Fifa

[fifa]

Hi Fifa,
Been thinking of you and your family and hoping that all is well. I hope that your dad's surgery went as planned and that you are both on the way to better days. Hugs,

Hi, there!

Thanks for thinking of me - I do appreciate it! (big smiley) The neurosurgeon tells us all went very well. Since a month had passed between the fall and the surgery, the surgeon said there was part of the spinal cord that was actually "stuck down" (his words) to the vertebra. That took some extra time to free up but he was able to free it. Dad is up and walking with a walker with standby assist of one (meaning one nurse walks beside him - no gait belt needed!). He is having trouble picking up his feet to walk and kind of shuffles, but he's doing it and doing it by himself. PT and OT have really been working hard with him because he's completely motivated and convinced he's going home (even though we're not sure that can happen). The hospital care coordinator is coming out tomorrow to evaluate their apartment to see if he can live there with mom...she'll be his caretaker. If not, then they will both move to a nursing home or some sort of assisted-living place, which will be sad. They just got that apartment in October - turned out to be a lucky move. So, we're all praying tonight that he can go home with "his baby." Neither one of them do very well when they are apart. Thanks for asking about him - that's very sweet.

Hope you and yours are all well and happy and had some great holidays! Thanks again! Write anytime!

Big smileys and hugs,
Fifa