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

[fifa]

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.




Gayle

I agree, Gayle, about the PTSD component to this. Someone else said lately (maybe it was Ed?) that it is basically coming pretty close to dying. I have to agree with that, too, with just one caveat that I saw my dad have a quintuple bypass, and seeing him on all the machines, with the heart/lung machine filtering his blood and the respirator breathing for him, that was pretty darned close, too. However, after that kind of heart surgery, they tell you right up front that depression afterward is a huge component of that. So yes, I agree, this surgery is just MAJOR and why wouldn't it take us months to recuperate?

Here's what I've decided - maybe it helps you or doesn't, but here's what I'm doing. I'm going to spend the next couple of weeks writing Christmas cards, and that's it. My family isn't buying any presents this year because we already have plenty to be grateful for. Two of us can't travel, so unless I can make it to my parents house for Christmas kisses, we won't be seeing each other this year. As many follow up appointments they will have down here after his surgery, we will see each other plenty. We'll celebrate when we all feel better. We're all just going to relax, hole up at home (hopefully with a Christmas cookie or two), and just be grateful to be here. No one in my family needs any more stress. This is a tough time of year for me an my parents anyway - my only brother passed away four years ago December 1st (he was 50 and diagnosed with Stage IV colon cancer by the time they figured out what was going on with him. He was diagnosed July 16th and died December 1st). So, no matter how much utter complete CRAP your life is, if you think about it, you can pretty much always think of someone who would trade places with you, given the chance.

Sorry to be so maudlin - I'm coming down off the Percocet. Next emotional outburst - irrational anger! LOL

You all take care of yourselves. I appreciate every single one of you and thank you for your great advice and listening ears. Oh, and smart-ass comments are ALWAYS welcomed here. (smiley)

Fifa

[Susie*Bee]

Fifa - that sounds like a very peaceful way to celebrate Christmas. And the best way for you and your father to keep the stress levels down and continue with your recoveries. I am so sorry about your brother's passing... it is difficult to lose a loved one at an early age and as you know it helps put life in perspective. Yes, you've been hit by a Mack truck with your surgery and then got a double whammy with your extra difficulties, and then had your concerns about your father. You've been through so much. Right now you need time to have some peace and quiet and build your spirit back up as you recover. You are being very smart about Christmas. (big smiley). Cherish all that you hold dear and let all the hooplah go. Sometimes when we go through life-altering difficulties, it helps us get a different perspective. I was 20 years old and engaged when I was diagnosed with melanoma... a very bad cancer. I have cherished each birthday since (I am 63 now) and the fact that I am happily married (43 years!), was able to have three wonderful daughters and now have three delightful grandchildren -- 2 little boys aged 5 and one granddaughter who is 10 months old. I am about to go with hubby to spend Christmas with them all. Two of the families live 1,000 miles away from me in separate parts of the US, so I am very excited indeed. Life brings its ups and downs, but even through all of those, I have felt truly blessed because at least I have had LIFE. God has blessed me abundantly. You have a Merry Christmas, relaxing and enjoying a relaxing time.

[LindaRacine]

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

[susancook]

FIFA....is that your name? It has such a positive sound to it,

Your post was brutally honest which I greatly appreciate. My recovery from my recent spinal cord injury has been challenging (deleted profanity) with disappointment and frustration. While I read so many entries by forum members who are doing well, most of me that feels like crap that I am "one of the chosen" to have complications. While I cheer for those that are doing so well, I really, really, really want to be doing well. Call it jealousy, call it disappointment. I want to be on the winning team!....not sitting in this wheelchair wishing that I could tour Puerto Vallarta, Mexico on my 3 week vacation here.

Your recovery clearly was not the usual. Your comment that "sometimes you wish that you had not done the surgery" almost brought me to tears. It is difficult to feel good about your surgery when you always feel like crap and whatever you do doesn't seem to work. That's how I felt during my first hospitalization this summer when in spite of having what I thought was a great medical team, nobody could figure out what was wrong with me when I could not move my legs. Then, finally after my surgery, my progress has been phenomenally slower than I would like it to have been. My favorite picture is the one of 2 buzzards sitting on a branch and one says to the other, "Patience, my ass. I want to go out and kill something".

Here comes the pep talk: I promise, that it will be better. I encourage you to seek the help of your regular provider with all of your non-spine symptoms and your spine MD for back problems. Call early, call often.
Enjoy your family at home and stay in and enjoy the season. Nothing is more precious than hugs and love from your husband. If you want to go out and to church or synagogue or whatever....go if you want. Invite very close friends over for a SHORT stay....the kind of friends that you can tell to go home if you want. Or, just stay home and enjoy Netflix or movie rentals.

Also, I encourage you to think about counseling to talk with a counselor to help you gain some perspective on all of this.

Imagine that you and I are the two buzzards that will eventually prevail!

You are in my thoughts. Hugs, Susan

[PeggyS]

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.

[hdsluckygirl13]

Hello...

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,

[fifa]

Fifa - that sounds like a very peaceful way to celebrate Christmas. And the best way for you and your father to keep the stress levels down and continue with your recoveries. I am so sorry about your brother's passing... it is difficult to lose a loved one at an early age and as you know it helps put life in perspective. Yes, you've been hit by a Mack truck with your surgery and then got a double whammy with your extra difficulties, and then had your concerns about your father. You've been through so much. Right now you need time to have some peace and quiet and build your spirit back up as you recover. You are being very smart about Christmas. (big smiley). Cherish all that you hold dear and let all the hooplah go. Sometimes when we go through life-altering difficulties, it helps us get a different perspective. I was 20 years old and engaged when I was diagnosed with melanoma... a very bad cancer. I have cherished each birthday since (I am 63 now) and the fact that I am happily married (43 years!), was able to have three wonderful daughters and now have three delightful grandchildren -- 2 little boys aged 5 and one granddaughter who is 10 months old. I am about to go with hubby to spend Christmas with them all. Two of the families live 1,000 miles away from me in separate parts of the US, so I am very excited indeed. Life brings its ups and downs, but even through all of those, I have felt truly blessed because at least I have had LIFE. God has blessed me abundantly. You have a Merry Christmas, relaxing and enjoying a relaxing time.

Hi, Susie Bee -

You're just the sweetest and I thank you for your note. Wow - I had no idea you had survived melanoma. That's really quite something.

My dear brother had been complaining to his primary care physician for well over a year about a change in bowel habits and bright red rectal bleeding. His doctor never did a colonoscopy - just diagnosed him with hemorrhoids. Unfortunately, my brother's only insurance was Medicaid because he was disabled, which is to say I think people with insurance get treated better than those with Medicaid in that I don't think enough expensive tests and such (like a colonoscopy or an MRI) get ordered up for the "uninsured" or the "underinsured." Just my personal opinion. He had just turned 50 and was in so much pain on July 16, 2010, that he went to the ER. They did a plain film and then a CAT scan, and told him within hours of him showing up there that he had cancer. They staged him over the next couple of days - he was stage four with heavy metastasis to the liver plus metastasis to the lungs as well. He went through two rounds of chemo. Needless to say, nothing helped. He died December 1st, 2010. So, every time I whine and complain about my stupid back and my petty problems, I think of him (and others I know) who would gladly trade places with me in a minute, and I try to be grateful for what I have. As I'm sure you and others here know quite well, there are just some days that everything is just too much to bear. I've been having a lot of those lately, I think mainly because of drugs (I've never taken much more than a Motrin or used a Lidocaine patch, so all this oxy-crap, valium, and 15 other things I'm taking are really just messing with my mind, I think). I'd like to wean down, and I have eliminated several meds completely (I tapered....I didn't just stop anything), but I'm finding that at eight weeks out today from surgery, after about eight or ten hours without a pain pill, I'm a sobbing immovable mass of emotion. I can't even get out of bed.

One of the worst things is that I'm a huge believer/practicer of yoga, and all the meds have screwed with my brain to the point where I can't even meditate. I've used a LOT of meditation and yoga to push through the pain, but it seems the pain pills won't let me focus in order to push through. That may not make sense. Sorry.

Again, thanks for your nice note. If you have any further advice or words of encouragement, I would be grateful to have them. You truly are blessed and I am happy for you!

Big gentle 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

[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!
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]

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!

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'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

[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.

[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.