How amazing that you’ve already been able to help someone else with an ES diagnosis & surgery! You certainly write beautiful posts too 
Will continue praying, God bless 
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WOW! You’re so very eloquent @JPB even in the late/early hours before surgery. You’re in the hospital now beginning your recovery, and I am praying for you. Thank you for sharing your thoughts yesterday. Looking forward to hearing about your surgery when you’re up to sharing.
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@Isaiah_40_31 . Reading all this brings me to tears as all emotions I have felt and feel, I know others have travelled the same road before me. I don’t have a particular faith and there are many times that I hope that if my time is up, it should be quietly , in my sleep, suffering over. Each day, I start with the hope of a corner being turned but like a labyrinth, there is no corner, just hope and the need to start living again x
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Oh @Mcwelly! This journey is so hard -the pain, etc, the mental fog, the difficulty of getting diagnosed while not being believed along the way takes it’s toll on so many of us. My story was quick & easy, but so many of our members have been terribly demeaned & disrespected by the medical community, & that I breaks my heart. 
It was my faith that carried me through, but I know others don’t have that to help shore them up. That’s why this community is so vital & also why I offer to pray for our members who are in crisis. I believe in a God Who helps us overcome the hard obstacles in our lives. That doesn’t mean the journey won’t be difficult. I see hard times as helping us grow in many ways. As we go along, hopefully, we become stronger, more compassionate, & patient people.
I will be praying for you as you travel this path & hope with all my heart that your life will return to a pleasant place. I’m so glad you found this forum. Lean hard on us here as we are glad to support you!
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Keep strong & keep that hope Mcwelly, praying for you & sending you hugs
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Thank you, it makes things a bit easier to know I am not alone, there will be an answer, no matter what is is or isn’t xx
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You are absolutely positively not alone my friend! We are all in or have been in a similar boat. So super grateful for this forum. 
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I am back, sort of, but need more days to recover and will not respond again for a bit.
Day 3+ since bilateral ES related surgery and I am finally able to communicate a little. The incisions are much longer than I expected and the nausea and pain were amplified which might explain why they had me stay at the hospital for almost 2 days with IV meds.
I had great support with my wife as my patient advocate the entire time, making it easier. I loved the fruit drinks and chicken noodle soup post op to dine on too.
Quick details/Recap:
- First surgery scheduled for the day but then I was pushed back an hour. I still liked being first for the day.
- Woke up with pain on back (due to laying in the OR for 3 +hrs).I also had bruises on the side of my head and side of my leg. Did you all wear the strong/thick sticker to protect your back?
- I have expected pain on incisions area, ears are full and enlarged
- massive swelling near surgical site and head in general
- taking out the pumps was an interesting feeling I wasn’t expecting. Ensure the team completely removes the stitch and skin attached before they yank it out.
- constipation continues even with meds - 3+ days now.
- I remained positive, holding on to hope, and a belief that this will only improve from here.
Thank you!!!
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Great to hear from you, @JPB. So sorry the post op has been very tough so far! Guarantee it will get better. Getting home & into your familiar environment will help a lot.
The drain removal story sounds pretty awful. Sorry that happened the way it did.
By the end of next week you’ll be feeling better. The healing journey is slow because our bodies are thorough in trying to put us back in good condition. Take it easy as long as you can once you’re home.
Looking forward to hearing about your progress when you feel better. 
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Sounds like you’ve had a tough time, wishing you well…I woke up whimpering after surgery; the nurse asked if I was in alot of pain, but it was just my back like you said you felt too. The drain coming out wasn’t pleasant for me either…I had bruising on the side of my face from nerve monitoring, is that what you have?
Thinking of you, glad that you have your wife beside you. Will keep praying
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Thank you all. I continue to smile and remain positive!!
Update:
- swelling throughout body and cannot urinate on day 4
- at ER now and will be evaluated.
JPB
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@JPB praying everything gets worked out for you. I’m so sorry for all you are going through. I had the bruising on both sides of my face (by my eyes/temples) and had several small cuts and deep red marks on my upper chest area.
I agree about the pumps I had what I believe was a resident take mine out he was not gentle and let me bleed all over my hair and face while he took out the other side…my husband being my advocate, immediately said can you please clean her up she’s bleeding all over the place face neck hair and he was like oh yeah. I haven’t had a regular bowel movement, 1 since my surgery been taking medicine but doesn’t seem to be helping. Still have jaw pain and paralysis on right side is no better. Swelling is still very much a thing even with icing. It seems like I am worse each day on how I feel overall. I don’t know. Add in the EXTREMELY Difficult time communicating with the office for my FMLA and STD, that’s not been a good experience at all. They put the wrong surgical procedure down in my paperwork once it finally did get submitted so here I am at square 1z I am Trying to rest and recuperate but can’t because I have all this extra stuff going on to deal with as my job is on the line. Trying to remain positive but won’t lie, it’s been very difficult. All best.
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WOW!! Please let us know what the doc thinks caused that once it’s resolved. That’s pretty scary, @JPB. I’m praying for you now!!
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@Ddmarie - I’m really sorry for your pain & frustration post op. That’s the downside of bilateral surgery - it’s more pain, swelling & a bit slower recovery than going through the surgery twice (& having to recover twice 
). I’m sure some of what you’re dealing with is due to the frustration w/ the FMLA & STD. That is a really annoying situation. The adrenaline & cortisol that gets released in your body because of the stress will ramp up your inflammation & symptoms for a bit. Staying positive will help counteract that, but I know how hard that is when you don’t feel good.
As far as the constipation goes, you might want to try CALM instead of the traditional laxative & stool softener which aren’t reliable for all people. CALM is powdered Magnesium citrate, & you can decide on the amount of powder you use to get to a point where it’s keeping you regular. Most drug stores & even grocery stores sell it. I recommend buying a flavored version vs plain as it’s pretty sour by itself. I think I ended up using 1 Tbsp/day in 8 oz of warm water until things got moving then I cut it down. I wouldn’t use more than that because it’ll keep you busy in the bathroom if you do.
I’ll be praying for the communication to improve w/ the hospital, & the FMLA situation to resolve in a timely fashion. Take a deep breath & try to relax tonight. Sending you a
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Very sorry to read here about very difficult post op difficulties. If swelling is main issue then maybe steroids are needed for now.
For opening bowels I would recommend using a water enema in bath so relaxing whole system. When in fight/flight mode our bodies shut down that department & drugs constipate us too. Opening bowels & pushing increases pressure in the body. Enema removes pushing & water helps bowels empty. It’s much kinder than chemical enemas the hospitals now use.
Thinking of you and wishing things to improve very soon for you. D
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Oh no, very sorry to read that @JPB, I hope you get answers & it gets resolved very soon. Praying for you
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Sounds like a really hard recovery for you too, sending you hugs and prayers, keep strong, it will get better
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Thank you!
Update.
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the MD believes I had too much fluids (IVs) causing my body to put on more weight or I reacted to the anesthesia negatively. Either way, I put on at least 20-25 pounds within 24 hrs of discharge.
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did anyone have longer incisions than expected? I will try and send mine.
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restrooms breaks are more normal now - hooray!!!
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I know some MDs are not experts in healing the wound or skin after surgery (plastic surgeons seems to know better there). What did your MD tell you for not putting anything on the wound?
Thank you!!!
Hope the image goes through but I am not sure it captures the length.
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Thank you @Jules!!!
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Great feedback, @PatientD, and I will keep this in mind. Thank you!!
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