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sarahfh said:
I'm glad you're feeling good about the surgery, I really hope it all goes well as works well for you.

I'm doing okay, still got my NJ tube but hopefully having it changed to a GJ December/January which will be nice. Finally gaining weight which is good and doing some physiotherapy to build some strength back up too :)
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I am feeling good about it! Nervous but excited!

Good thing you're gaining some weight and strength!
 
Oh man, visiting family the last days before surgery is turning out not to be the best idea. Everyone's pretty nervous and anxious for me. They're trying to pretend they're not, but they really are. And everyone's well-wishes and "we'll be thinking of you on Monday" is noooot making me feel better at all. It's making my anxiety just skyrocket and I'm suddenly thinking "oh crap I'm going to die" constantly :p

How do you guys handle anxious family members? My mother is going to be staying with me once I'm released from the hospital for about a week to help out, which I'm very grateful for, but I also suspect she'll be pretty anxious and when she's anxious she can be pretty rude to me.

I'm honestly considering just having my family drop me off at the ward and then doing the whole surgery and the preparations and admission just alone, and then they can see me after.

How have you handled similar situations with family/caregivers?
 
Hi Izzie,

I stood my ground and told my mother and father that it needed to be done, or else I couldn't get better and that I didn't want to live the way I was anymore. I always left for surgery, in the bed, being rolled into surgery, with the words, "I love you, see you later." It was the best I could do. I figured I would make it, and I did, odds are you will too.


I'll talk to you again soon and good luck,

Chris
 
Had a bad GI day again today. I am so over GI problems and wish that these symptoms would resolve. I had bad cramping again today right before having to go to the bathroom.

Unfortunately, I cannot try the Donnatal until Monday because it's on order at the pharmacy. I had some trouble getting the prescription filled because my usual pharmacy does not carry it due to the fact their supplier discontinued it so they can't even order it. I had to call my old pharmacy to see if they carried it and, fortunately, they can order it. Another unfortunate fact is that my insurance does not cover the cost - it would be $563 out-of-pocket. I found a coupon on the Donnatal website that brings the cost down to just $15! I am really hoping it works. I saw some promising reviews online that IBS sufferers find relief with it. :)
 
Hi MissLeopard,

I hope the coupon works and you can find some relief. I also hope Donnatal helps you when you get it on Monday. You can pm me any time if you need to vent or just talk.


Hoping you feel better soon,

Chris
 
I just wanted to stop in quickly to say good luck on your surgery, Izzie!! I don’t have much advice as far as your family goes, but do whatever you need to do to be the most comfortable and happy. They’re worried because they care about you, but sometimes you need to be selfish and take care of yourself. You’re the one having the surgery, so you should try to make it as good of an experience as possible. Please update us as soon as you can. I’ll be thinking about you! I have a good feeling about this surgery. <3
 
cmack said:
Hi MissLeopard,

I hope the coupon works and you can find some relief. I also hope Donnatal helps you when you get it on Monday. You can pm me any time if you need to vent or just talk.


Hoping you feel better soon,

Chris
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The pharmacy tech ran the coupon thru with me on the phone and it worked. :) The only thing I am worried about is the phenobarbital making me tired so I plan to take the first dose while at home so I can gauge my reaction to it.

Thank you for your support. :)
 
Just took my first dose of Donnatal elixir. Man, that stuff tastes NASTY! It reminds me of the Hycet I had to take earlier this year after my tonsillectomy - too much alcohol! I had to take something for my stomach cramps again and decided that, since I was home and my family was home, I would try my first dose. It was about 15 minutes ago and I'm feeling kind of sedated and a little loopy, but nothing too bad (probably a good thing I took it around bedtime). Definitely will not take it unless absolutely necessary. I'm not sure if it's working yet because the cramps were coming in waves. I haven't felt one in a while, so maybe it's doing something? Only time will tell. I'm supposedly allowed to take the medicine up to 4 times a day (as needed).

By the way, my GI nurse is PHENOMENAL! My pharmacy called her to let her know they were unable to fill/order the Donnatal elixir. She sent me a message thru the portal and said she wanted to send the tablets but, when she called the pharmacy, they said I had transferred the prescription. I told her I was able to fill it at my old pharmacy. They mixed it on the spot when I paid for it (it came in three separate bottles). I am VERY pleased with my GI and her nurse. :)
 
MissLeopard83 said:
Just took my first dose of Donnatal elixir. Man, that stuff tastes NASTY! It reminds me of the Hycet I had to take earlier this year after my tonsillectomy - too much alcohol! I had to take something for my stomach cramps again and decided that, since I was home and my family was home, I would try my first dose. It was about 15 minutes ago and I'm feeling kind of sedated and a little loopy, but nothing too bad (probably a good thing I took it around bedtime). Definitely will not take it unless absolutely necessary. I'm not sure if it's working yet because the cramps were coming in waves. I haven't felt one in a while, so maybe it's doing something? Only time will tell. I'm supposedly allowed to take the medicine up to 4 times a day (as needed).

By the way, my GI nurse is PHENOMENAL! My pharmacy called her to let her know they were unable to fill/order the Donnatal elixir. She sent me a message thru the portal and said she wanted to send the tablets but, when she called the pharmacy, they said I had transferred the prescription. I told her I was able to fill it at my old pharmacy. They mixed it on the spot when I paid for it (it came in three separate bottles). I am VERY pleased with my GI and her nurse. :)
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I'm glad you are happy. I hope the new medicine makes you feel better.
 
Hello MissLeopard,

We get to have all the fun hey? Testing new drugs is just totally freakin awesome....unless they make things worse...(we should be paid big bucks for doing all these experiments) Ever feel like a lab rat? :( Hopefully this new experiment that you are involved in will continue to be a positive experience. :)


Best wishes as always,

Chris
 
cmack said:
Hello MissLeopard,

We get to have all the fun hey? Testing new drugs is just totally freakin awesome....unless they make things worse...(we should be paid big bucks for doing all these experiments) Ever feel like a lab rat? :( Hopefully this new experiment that you are involved in will continue to be a positive experience. :)


Best wishes as always,

Chris
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You said it! I'm always worried about the reactions because my body is hypersensitive and likes to react to almost everything. I get that from my paternal grandparents, of course, since both my grandmother and grandfather have high sensitivities to MANY medications.

Anyway, I took the Donnatal at 8pm and fell asleep around 9:30pm after eating a late dinner (thankfully, I was propped up with my Boomerang pillow, so no GERD) and didn't wake up until 4am this morning. That phenobarbital is STRONG! It doesn't help that I had to take my antihistamine today before getting my allergy shots so I am pretty drowsy. I will play it safe with the Donnatal and try my hardest not to take it at work unless necessary. I may even try cutting the dose in half from 5mL to 2.5mL to see if that is effective. :)
 
Yeesh, last night was pretty bad. I had a horribly tender spot about 2 inches right above my navel that was very sore to the touch. It also hurt to eat. I ended up taking some Donnatal and wound up knocking out for the night. I woke up this morning and felt much better, albeit tired. I forgot to take my Nexium last night so I'm wondering if it's causing low stomach acid. I'm going to stop taking it for a few days and see if it resolves. If not, I'll get in touch with my GI on Monday. :(
 
I took the Donnatal yesterday twice (I can take it up to 4 times a day) - once in the late morning and once before bedtime. The tender spot above my navel was causing some pretty painful cramping - still not sure why it's tender but I believe it's because of the Nexium. I haven't taken it for 2 days and my stomach already feels better. Instead, I took some Pepcid which is gentler for me. I think I must be sensitive to PPIs - this is the second time this has happened where my stomach feels like I don't have enough stomach acid to digest food.

Anyway, I have been pretty "backed up" because I took some loperamide on Monday for diarrhea and I didn't want to take a Linzess because that will just start the cycle all over again. I think the diarrhea was due to the Xifaxan but I finished the treatment yesterday, so hopefully things will get back to normal. I was able to go this morning, so I feel much better. Thankfully, the Donnatal doesn't seem to cause constipation, so that's a plus.

I hope everyone had a Happy Thanksgiving! :)
 
MissLeopard, I’m glad you’re feeling better. It’s basically all a balancing act, isn’t it? Sometimes we have to take medications to counteract the side effects from other medications. It’s insane.

I started “seeing” a new doctor. She’s in a different state (because where I live is seriously lacking in good doctors), but she’s willing to work with me over the phone. She’s a naturopathic doctor. The one thing I have actually been diagnosed with is SIBO, and I tried to treat it with the guidance of a local doctor, but she clearly didn’t know much about it. She told me, “Hmm I’ve never had a patient that this didn’t work for.....” and then she basically didn’t know what to do next. But my new doctor is familiar with treating SIBO so maybe she can help?! I’m not getting my hopes up though, because I’ve been crushed way too many times in the past. She’s having me do a couple tests, and then she said if they don’t show anything, she’ll probably have me test for SIBO again so we can see where I’m at and start trying to treat that.....again. Of course, I’ll keep you guys posted.

This past week was a tough one for me because most of my family went on vacation for my cousin’s wedding. I’m very close with my cousin, but I’m too sick to travel, so I was unable to go. People kept posting pictures and stuff on Facebook, and it kept making me so sad that I’d start crying. I actually had to unfollow one of my family members because she posts A LOT, and I just couldn’t deal with it. I hate being sick and I hate missing out on life!!

Anyway, I hope all of you are doing as well as possible!
 
I could not agree more, akgirl. My body was not happy with me yesterday. I went shopping with my mom and sister and I'm paying the price today. I woke up with horrible neck pain and lower abdominal cramps. Fortunately, the Donnatal stopped the cramps and Biofreeze solved my neck pain. I got a small gel pack in the mail when I ordered from Zulily and I love it - I think it works better than Aspercreme due to the cooling sensation. I plan to buy a bottle of it. It has no pain reliever ingredients other than menthol so it's more natural. It also has some herbal ingredients. :)

As for today, I decided to take it easy. I may go out by myself later, but I decided not to go with my mom and sister again today. My sister takes too long in stores and I was getting really irritated yesterday because of my sensory overload problems. Too crowded and noisy in the stores. Because I rode with them, I was not able to leave when I was ready to go which was a HUGE problem. Next time, I'll know to ride separately like I normally do.
 
I'm here! Just came home after a full week in the hospital. The surgery seemingly was a success - hard to know yet, but the post-op care in hospital was a disaster and a nightmare. They were entirely unable to handle my pain, the epidural pump that was placed failed THREE TIMES, I had strange numbing as a side effect and then there was leaking and then it just didn't take, so I was in really terrible pain that they were unable to control. Mostly because there was no doctor on the ward to authorize stronger pain medication. I spent most of three days screaming and crying and whimpering in bed thinking I was for sure going to die. Nurses didn't understand that something was truly wrong and would tell me to quiet down and sleep, that they had other patients.

One nurse who showed up in the middle of it was so appalled that she filed a report against her own hospital and boss/coworkers for malpractice. She ended up being the one who got the pump replaced the first time, such a brave young girl she can't have been more than maybe 22-23, who pretty much went to war against senior nurses and doctors who were more of the opinion that I was just exaggerating. She was right, though, the pump was leaking and malfunctioning. Meaning I was largely without pain relief for the first 48 hours post-op.

One of the days my mother was with me in hospital and she too thought I was going to die, I was in and out of it due to the pain and drugs but apparently I had told her not to leave because I was going to die soon and didn't want to be alone.

Open abdominal surgery is NOT something you want to go through without adequate pain management, and once I've settled in at home I too plan to file a report. It was all honestly so traumatizing that I don't know how to wrap my mind around it still. I didn't think it was possible to experience pain like that and live to tell the tale. It's so strange to be laying surrounded by people screaming your head off thinking for sure you're dying, and have them just go about their business and ignore you. Pretty sure I owe my life to that one nurse, I'm not sure my body could've handled much more pain before giving up.

The final two days I've been on strong oral pain medications which has worked much better than the pumps ever did. Made progress fast once the pain was under control and now I am home. Still in a lot of pain periodically, and eating is near impossible. I'm getting spasms where my stomach is wrapped around my esophagus and the incision is itchy and at times very painful as well. The hospital had a strange idea when it came to diet so I had a lot of bloating and issues with the food, but now that I'm home I'm able to do things right and it's a bit easier. These issues are all within the normal range recovery experience of this surgery though, I believe.

REALLY terrible itching as well at the incision site but I guess that's a good sign. I have to wear a girdle and give myself blood thinner injections, and I've had several IV sites that caused me trouble and that still hurt a lot. Nothing compared to the first few days of this week, but I have some kind of post-traumatic stress thing going on and I'm just tired and sad. I can't wait to have the compression girdle off and the staples and to be off the meds. It'll be a few weeks still but I'm looking forward to it so much.

I'm glad I made it and I hope the end result will be worth it. I have been off my reflux medications since the day of surgery and while I've had a few episodes of heartburn, it's NOTHING compared to what it was like before.
 
Oh Izzie I am so sorry. That sounds horrible. I can well believe it took them that long to figure out what to do. I had bone surgery on both feet in college and threw up the oral pain medication they gave me the morning after surgery. It took them all day to figure out I just needed something different and I finally ended up on subcutaneous morphine. I lay in bed weeping because it hurt so much. What I cannot believe is that it took them three days to figure out the epidurals weren’t working. I’ve found here in the states that the nursing care is better at some hospitals. That doesn’t always correlate to better doctors, though. In my opinion the worst thing they’ve done here is the creation of hospitalists. They are doctors who work solely in the hospital as “in house general practitioners” and in my case have blocked me from seeing the specialists I needed to see. I am also shocked that they had no proper eating plan for you after the surgery. Aside from that one wonderful nurse, was there anything they did right? Are you able to manage on your own or is your Mother with you?

Incision itching can be awful. My Mother was allergic to the material they used to use to sew up incisions and after one abdominal surgery the stitches popped. There were little craters where the stitches were rejected by her body. Good grief. Sometimes you go to the hospital and some things get better and others get worse. I can’t remember (and I apologize) if you have to return to a job in a timely manner or if you can take the time you need to recover. I hope it’s the latter and that there is no outside stress making you crazy. I’m sure you are staying hydrated even if you aren’t eating much. Can you tell if there is a difference in your dysphagia yet? It’s great that your heartburn is so much better! What a welcome change! Don’t rush your recovery and I’ll Be thinking of you.
 
OMG, Izzie! As a future RN, I cannot imagine leaving my patient wallowing in severe, unimaginable pain! I am so glad that nurse came to your aid and was an advocate for you like she should have been! What a horrific experience! I'm so glad you're OK though but I totally understand if you have some PTSD going on. I've had 3 surgeries (the first was the worst one) but NOTHING compared to open surgery. If my pain was bad, I can't imagine how yours was. I am so sorry you had to experience that! Please do file a report when you feel able. They should not be allowed to continue with this horrible practice! I am so angry for you! :(
 
Jabee said:
Oh Izzie I am so sorry. That sounds horrible. I can well believe it took them that long to figure out what to do. I had bone surgery on both feet in college and threw up the oral pain medication they gave me the morning after surgery. It took them all day to figure out I just needed something different and I finally ended up on subcutaneous morphine. I lay in bed weeping because it hurt so much. What I cannot believe is that it took them three days to figure out the epidurals weren’t working. I’ve found here in the states that the nursing care is better at some hospitals. That doesn’t always correlate to better doctors, though. In my opinion the worst thing they’ve done here is the creation of hospitalists. They are doctors who work solely in the hospital as “in house general practitioners” and in my case have blocked me from seeing the specialists I needed to see. I am also shocked that they had no proper eating plan for you after the surgery. Aside from that one wonderful nurse, was there anything they did right? Are you able to manage on your own or is your Mother with you?

Incision itching can be awful. My Mother was allergic to the material they used to use to sew up incisions and after one abdominal surgery the stitches popped. There were little craters where the stitches were rejected by her body. Good grief. Sometimes you go to the hospital and some things get better and others get worse. I can’t remember (and I apologize) if you have to return to a job in a timely manner or if you can take the time you need to recover. I hope it’s the latter and that there is no outside stress making you crazy. I’m sure you are staying hydrated even if you aren’t eating much. Can you tell if there is a difference in your dysphagia yet? It’s great that your heartburn is so much better! What a welcome change! Don’t rush your recovery and I’ll Be thinking of you.
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Many of the nurses were pretty okay once everyone was on board that something really was wrong, but then there were no available doctors and they were understaffed so even if they wanted to do something oftentimes they couldn't, and what they could do wasn't enough.

A few nurses were negligent, one was downright horrible; made me get up and walk, told me I was "full of dope" and needed to get my shit together. When really, I had hardly any functional pain relief. If I see that woman ever again in my life, I'm pretty sure I will punch her in the face.

I remember being in my hospital room thinking I needed to call an ambulance, which is an absurd though that you shouldn't have to have when you're in the darn hospital...

I thankfully do not have to return to work anytime soon, and my mother has been kind enough to extend her stay to be able to help me out at home for at least 3-4 days.
 
Izzie, thank you for updating, but oh my goodness! That sounds extremely horrible. Definitely do file a complaint (or a lawsuit?). In the meantime, rest and heal. I hope that, despite the horrendous experience that you had, that the surgery was still a success and you do have a better quality of life following your recovery from the surgery and from that experience.
 
By the way; anyone else here who's had a catheter in and had serious difficulty peeing after? I had my catheter taken out yesterday and haven't been able to feel the need to urinate since. I figured it was still okay since I was able to go and just did so regularly, now I'll go to the bathroom and have to sit for a minute to even get a trickle going, and it doesn't necessarily feel like I'm emptying my bladder enough. Will probably have to go in to at least have an ultrasound to see if what I'm feeling is correct, but I'm trying to put it off until the morning so I don't have to go to the ER or anything tonight.

ETA: I also think I'm developing a cold as I have a runny nose and feel feverish this evening. Just what I need right now...
 
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Izzie said:
By the way; anyone else here who's had a catheter in and had serious difficulty peeing after? I had my catheter taken out yesterday and haven't been able to feel the need to urinate since. I figured it was still okay since I was able to go and just did so regularly, now I'll go to the bathroom and have to sit for a minute to even get a trickle going, and it doesn't necessarily feel like I'm emptying my bladder enough. Will probably have to go in to at least have an ultrasound to see if what I'm feeling is correct, but I'm trying to put it off until the morning so I don't have to go to the ER or anything tonight.

ETA: I also think I'm developing a cold as I have a runny nose and feel feverish this evening. Just what I need right now...
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It sounds as though you are experiencing urinary retention. Sometimes, when a foley catheter is left in a few days, the bladder becomes "lazy" and, when it is removed, the nerves don't send a signal to the brain. Since you had an epidural, that can also numb things where you don't feel the signal to urinate (some pain medications can do that, too). I would call your GP or surgeon to let them know. If you're not voiding regularly, it can cause a urinary tract infection.

https://www.verywell.com/what-to-do-if-you-cant-urinate-after-surgery-3157318
 
Izzie - That sounds completely traumatizing! I’m so sorry you had to go through that. After all you’ve been through, the surgery better give you a way better quality of life! You deserve to be completely healed. :) I think you should definitely file a complaint when you feel up to it. If you can remember the names of the people who really sucked, I’d include them. It’s ridiculous that you were treated that way! Maybe you can also include some praise for the nurse who actually cared and did her job. It sounds like she deserves to be recognized for her efforts......although I mean, technically shouldn’t all the nurses have done what she did...? I’m glad your mom will be there for a few more days. Definitely call or go in if things don’t feel right (although I’m sure the hospital is the last place you want to be right now). And as others said, keep an eye on your temperature. I hope you start feeling great really soon!
 
akgirl said:
Izzie - That sounds completely traumatizing! I’m so sorry you had to go through that. After all you’ve been through, the surgery better give you a way better quality of life! You deserve to be completely healed. :) I think you should definitely file a complaint when you feel up to it. If you can remember the names of the people who really sucked, I’d include them. It’s ridiculous that you were treated that way! Maybe you can also include some praise for the nurse who actually cared and did her job. It sounds like she deserves to be recognized for her efforts......although I mean, technically shouldn’t all the nurses have done what she did...? I’m glad your mom will be there for a few more days. Definitely call or go in if things don’t feel right (although I’m sure the hospital is the last place you want to be right now). And as others said, keep an eye on your temperature. I hope you start feeling great really soon!
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I also hope you start feeling well soon.
 
No fever so far today, hallelujah!

I do have a strange sensation at the top of my incision where I just feel like my guts are about to fall out. Not sure if that's normal since I've never had surgery like this before, but taking short walks is hard, I feel like I have to press at the incision to keep it from falling apart. Probably in part psychological but it does feel very strange. Am going to make an appointment with a nurse to have my wound redressed. I was given things to do it alone but I feel like if I see blood and staples on my own body I'll faint, or just do it wrong and get an infection or something. Hopefully they'll be able to help me out.

Am losing weight rapidly and not eating much. I've lost about 10 lbs so far this past week. I'm normal weight, and don't necessarily want to come out of this looking like a bag of bones, but I suppose it is what it is.
 
Izzie said:
No fever so far today, hallelujah!

I do have a strange sensation at the top of my incision where I just feel like my guts are about to fall out. Not sure if that's normal since I've never had surgery like this before, but taking short walks is hard, I feel like I have to press at the incision to keep it from falling apart. Probably in part psychological but it does feel very strange. Am going to make an appointment with a nurse to have my wound redressed. I was given things to do it alone but I feel like if I see blood and staples on my own body I'll faint, or just do it wrong and get an infection or something. Hopefully they'll be able to help me out.

Am losing weight rapidly and not eating much. I've lost about 10 lbs so far this past week. I'm normal weight, and don't necessarily want to come out of this looking like a bag of bones, but I suppose it is what it is.
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Ask the nurse about the weight loss.
 
Izzie said:
No fever so far today, hallelujah!

I do have a strange sensation at the top of my incision where I just feel like my guts are about to fall out. Not sure if that's normal since I've never had surgery like this before, but taking short walks is hard, I feel like I have to press at the incision to keep it from falling apart. Probably in part psychological but it does feel very strange. Am going to make an appointment with a nurse to have my wound redressed. I was given things to do it alone but I feel like if I see blood and staples on my own body I'll faint, or just do it wrong and get an infection or something. Hopefully they'll be able to help me out.

Am losing weight rapidly and not eating much. I've lost about 10 lbs so far this past week. I'm normal weight, and don't necessarily want to come out of this looking like a bag of bones, but I suppose it is what it is.
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Do you have an abdominal binder for support? Since you had open surgery, your muscles are weakened and you would probably benefit from a medical binder while you recuperate. I would talk to your nurse about the loss of weight - while some weight loss is normal, you don't want to lose too much. I imagine you're not eating much because it's painful? Perhaps you can get some supplemental nutrition thru ready-made shakes like Ensure or Boost? Getting enough vitamins and nutrients is important for recovery and aids in healing. Hope you get some answers soon!
 
I do have an abdominal binder! The good nurse made sure I got one of those. Without it I wouldn't be able to move well at all I don't think. I didn't get it until day 3 though. And I can never tell if it's on too loose or too tight or what. I got an appointment tomorrow to have the wound redressed at my GPs office since my surgeon is in another city, so I guess they'll take a look then to see if it's normal. No one's really looked at it since the OR, it's been covered, and when I was in all that pain I was tensing up a whole lot so it's not impossible that I ripped a staple or something.

I'm trying to drink more supplement shakes, I was on clear liquids for a number of days because I was in too much pain and everything else they tried to give me in the hospital was insane (I literally got ground beef with cabbage and onions on day 4...), but it's slow and I have absolutely 0 appetite. I can drink water without issue, and tea, but most other things do not appeal to me in the slightest.
 
Good grief! They tried to give you ground beef with cabbage and onions? Who was in charge of your dietary instructions? That would be enough to send most of us into some nice abdominal spasms at the very least. Since my diagnosis I eat mostly white things except for simple veggies and fruits. Make sure you get some protein, either in a shake or something like bone broth. Gelatin powder can provide protein as well. And eggs are pretty simple. Hope your incision is fine when you get it re-dressed.
 
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Jabee said:
Good grief! They tried to give you ground beef with cabbage and onions? Who was in charge of your dietary instructions. That would be enough to send most of us into some nice abdominal spasms at the very least. Since my diagnosis I eat mostly white things except for simple veggies and fruits. Make sure you get some protein, either in a shake or something like bone broth. Gelatin powder can provide protein as well. And eggs are pretty simple. Hope your incision is fine when you get it re-dressed.
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Served with tomato sauce! I thought it was a joke at first, but oh no, they fully expected me to eat it. I didn't, of course, but still... Diet generally was weird in the hospital, they failed to order the right thing for patients and they wanted me to eat crackers day 2 (which I did, but of course it made me bloated as hell). And when I was on a soft diet they gave me a plate full of rice and sausage... In most hospitals after a fundoplication you're on a liquid diet for 2 weeks, but not here, oh no. Finally a surgeon during rounds said I could just be on their liquid diet instead since the soft diet clearly was not working out...

For some reason, Ensure is giving me heartburn and every instance of heartburn right now is upsetting since it makes me feel like the surgery failed. Of course, I was instructed to stop my PPIs cold turkey and I was on 120 mg/day so I'm probably having some serious rebound. Hopefully it will pass.

ETA: This was an abdominal surgery ward. Everyone got the beef/cabbage/onion/tomato sauce combo that day... Just, not a good idea.
 
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Izzie said:
Served with tomato sauce! I thought it was a joke at first, but oh no, they fully expected me to eat it. I didn't, of course, but still... Diet generally was weird in the hospital, they failed to order the right thing for patients and they wanted me to eat crackers day 2 (which I did, but of course it made me bloated as hell). And when I was on a soft diet they gave me a plate full of rice and sausage... In most hospitals after a fundoplication you're on a liquid diet for 2 weeks, but not here, oh no. Finally a surgeon during rounds said I could just be on their liquid diet instead since the soft diet clearly was not working out...

For some reason, Ensure is giving me heartburn and every instance of heartburn right now is upsetting since it makes me feel like the surgery failed. Of course, I was instructed to stop my PPIs cold turkey and I was on 120 mg/day so I'm probably having some serious rebound. Hopefully it will pass.

ETA: This was an abdominal surgery ward. Everyone got the beef/cabbage/onion/tomato sauce combo that day... Just, not a good idea.
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Ensure has carregeenan in it which is supposed to be bad. I think there is a variety of Boost that doesn't have it.
 
ronroush7 said:
Ensure has carregeenan in it which is supposed to be bad. I think there is a variety of Boost that doesn't have it.
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Yes, it's Boost Simply Complete. I love it! It's the only shake I get that doesn't upset my stomach issues (even the ProNourish messed me up). They have two flavors - vanilla bean and dark chocolate. I buy it at Walmart and Target, but you can also buy it online. :)
 
I made an appointment with a rheumatologist today for the 21st. I have been suffering quite a bit with pretty bad joint pain and bursitis and it is getting increasingly worse. I saw the chiropractor 2 weeks ago and I see him again on Thursday, but my neck has been quite painful. Also, my cervicogenic dizziness was so bad yesterday that I ended up calling out sick from work. I would try to close my eyes to sleep because I was so tired and I would feel like the room was spinning - I got horribly nauseated because of it. I started watching a girl's vlogs on YouTube and she has so many of the symptoms I have and was diagnosed with Ehlers-Danlos syndrome, type 3 (hypermobile type which is the most common and has the least complications). I'm not sure if I have it, but I definitely want to know what's going on. I also have a family history of rheumatoid arthritis and fibromyalgia. I was diagnosed with fibromyalgia by my former GP and I was diagnosed with trochanteric bursitis by my current GP.

Anyway, I am 34 and I feel like an old, arthritic woman. Chiropractors can only help so much and I am constantly in pain in my neck, back, and hips. I even feel joint pain in my fingers which is bothersome since I work f/t. I remember I had a very high C-reactive protein level back in 2014 but my cholesterol was normal. Nothing was done about it and I'm wondering where my level is now. I hope this doctor can give me some answers. :(
 
cmack said:
I hope you get some answers too. I know it's expensive to go to the Chiropractor here, It helps me sometimes though.
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Yeah, until I meet my out-of-pocket maximum, it's $40 per visit so I'm only going every two weeks. Seeing a doctor is actually cheaper - a specialist is less than $30. The frustrating thing is that the chiropractor helps, but only for a day or two and then my joints start hurting all over again. My neck pain has been the worst lately and it's hard to get comfortable, even in bed. Fortunately, I have a Boomerang pillow that makes sitting up easy in bed, but I like to lay flat when sleeping. Ugh! This is just something I don't want to deal with! :(

Another thing that happened today is a reaction from my allergy shots. I get them every week for the reactions I had during skin prick testing - I am allergic to fungi mix, cats, dogs, dust mites, maple/boxwood, and rye grass (cats and dust mites were the worst). I had a bad reaction on my right arm which is where the shot with the cat/dog/dust mite allergens was injected. I was told by the nurse that a small welt - like the size of a mosquito bite - for a day is normal but if it is larger or lasts longer than a day, I need to let them know ASAP. The welt is a size of a silver dollar and itches so bad! I've rubbed cream on it and taken another antihistamine and it still itches. Fortunately, my breathing isn't worse and I don't have any other symptoms. I have an Epi-Pen set to use if needed, but I only have one symptom and I need at least 2 to use it - of course, I would have to go to the hospital ER afterward. Anyway, I will call the office tomorrow morning to let them know. I think they will probably lower the dose of the injection and, if I'm still having a reaction, they will discontinue that dose. :(
 
So my mother who's been acting as my caregiver over the past few days has a BRUTAL cold. I'm pretty sure I'm already done for since she's touched my meds and food etc. for days.

How bad is a cold when you've just had surgery anyway? I can't even imagine sneezing right now...

I kind of want her to leave but I also am not really able to cope alone right now. Going to the store would be impossible for me at the moment, I get very dizzy walking even around my apartment building.

A bit of a dilemma...
 
Has anyone else had excessive amounts of mucus in your stool for weeks on end? I've been doing my best to follow a low-FODMAP diet and I also completed Xifaxan a week ago. I'm still having a lot of mucus and I'm wondering if there is something else I should be doing. :(
 
Izzie, I have no idea how bad it is to sneeze after abdominal surgery but I am sure it’s perfectly awful. How are you feeling today (and how is your Mom)? How did the dressing change go? I’m hoping both you and your Mom feel better soon. How is the heartburn (now that you’re not being fed mince, cabbage, and tomato sauce!)? I need a refill for my PPI which I take twice a day. My wonderful GI has semi-retired and moved his practice and the doctors who have taken over his practice—and whom he ecommended—doesn’t have any appointments until July 2018. I know they’re treating me as a new patient, and it’s just ridiculous! When I asked what I should do if I have any issues before the appointment (and I do), she said to call the on-call GI! Good grief!

Hope things are going well for you!
 
Jabee said:
Izzie, I have no idea how bad it is to sneeze after abdominal surgery but I am sure it’s perfectly awful. How are you feeling today (and how is your Mom)? How did the dressing change go? I’m hoping both you and your Mom feel better soon. How is the heartburn (now that you’re not being fed mince, cabbage, and tomato sauce!)? I need a refill for my PPI which I take twice a day. My wonderful GI has semi-retired and moved his practice and the doctors who have taken over his practice—and whom he ecommended—doesn’t have any appointments until July 2018. I know they’re treating me as a new patient, and it’s just ridiculous! When I asked what I should do if I have any issues before the appointment (and I do), she said to call the on-call GI! Good grief!

Hope things are going well for you!
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My mom is doing well, we think her "cold" might just be allergies, honestly. She hasn't had a fever yet so hopefully I won't catch anything too horrible :lol:

The dressing change was really good, there was no bleeding or oozing or anything, actually the incision looks surprisingly good and is healing well. Of course with staples it looks pretty brutal still. The heartburn is still there, I'm back on PPIs though thankfully as I think part of the problem is rebound from stopping the meds so abruptly. Hopefully tapering off them will ease the problem. It's certainly better than it was before surgery, but if this is as good as it gets then I can't say I'm pleased.

Eating is difficult and I suspect things are getting stuck at the wrap, I get a strange crampy sensation and feel like I can't take a deep breath for a while. Still, I'm in the very early stages of recovery and trying not to freak out. Meanwhile all I can seem to tolerate is a strange vanilla pudding with strawberry jam, as well as completely smooth soups and one particular green smoothie from a nearby coffee shop :p

Definitely not having as much cramping and bloating as I did in the hospital on their so called diet :tongue:

I will say though that I am very hesitant to go back to my surgeon or that hospital for anything at all ever again. I have a post-op appointment with one of the nurses who treated me horribly and I just refuse to go. I'm going to call and see if another nurse can see me instead, if not I might just insist on being transferred elsewhere already to be honest.

As it turns out, my surgeon didn't even perform my surgery. I asked several times if he was the one doing the actual cutting, and he promised he was. Read my chart the other day, and it was a resident who did it. He was assisting, but he didn't actually perform the operation though I had asked and was promised several times. It's not that a resident did it - I'm sure it was a very good resident and had I been told beforehand I might've been okay with it - I just don't think you lie to a patient's face about things like that. The trust is gone and I don't want any further treatment there if I can help it.
 
Well, the surgeon is supposed to ask you if it is okay with you if a resident works on you. That way you give “informed consent”. I had surgery on a foot recently and the resident who was assisting actually got stuck with one of the retractors! They had to test me for HIV and hepatitis (which was fine; I understand the protocol). You should have been given the opportunity to say yes or no to a resident working on you. Glad the heartburn is better (even if it is because you are back on the PPIs). Hopefully things will settle down with your swallowing. I really hope you can enjoy a better quality of life once you have recovered fully.

I would definitely ask for a different nurse or ask to be switched to a different hospital. It’s really awful when caregivers treat you badly, and even worse when you are completely at their mercy. Glad your Mom isn’t too sick.
 
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Exactly. And I specifically asked that no resident work on me. I specifically said "are you doing it and not some resident?" and he promised that he would do it. If I was going to let a resident do it I would've wanted to do some research and meet them beforehand. I never met the resident who performed my surgery.
 
Izzie said:
Exactly. And I specifically asked that no resident work on me. I specifically said "are you doing it and not some resident?" and he promised that he would do it. If I was going to let a resident do it I would've wanted to do some research and meet them beforehand. I never met the resident who performed my surgery.
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That's grounds for a formal complaint. You have every right to know who is going to be doing your surgery so you are informed of every decision. I would submit a complaint to the hospital where you had the surgery, the doctor's practice, and your state medical board. What he did constitutes medical malpractice.

http://articles.chicagotribune.com/...1_medical-residents-surgeon-medical-emergency

https://biotech.law.lsu.edu/books/lbb/x955.htm
 
MissLeopard83, I'm in Sweden so the process is a bit different but I am being contacted by the chief of surgery next week, as well as filing a formal complaint. I've never signed any consent forms or anything, no one really does here, so I'm not sure what the rules are regarding this kind of thing. I've definitely already let them know that I'm NOT pleased with the post-op care and the incredibly poor pain management. Being told that you "have to understand that we're too busy right now" when you're writhing and screaming in pain is not acceptable.

I'm not sure how much I can do or what I have the energy to do but I'm filing a few complaints in writing so they at least have to deal with it and go through the formal process of reviewing their practices...
 
Izzie said:
MissLeopard83, I'm in Sweden so the process is a bit different but I am being contacted by the chief of surgery next week, as well as filing a formal complaint. I've never signed any consent forms or anything, no one really does here, so I'm not sure what the rules are regarding this kind of thing. I've definitely already let them know that I'm NOT pleased with the post-op care and the incredibly poor pain management. Being told that you "have to understand that we're too busy right now" when you're writhing and screaming in pain is not acceptable.

I'm not sure how much I can do or what I have the energy to do but I'm filing a few complaints in writing so they at least have to deal with it and go through the formal process of reviewing their practices...
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Hmmm, I wish I knew more about your country to help you. The resident performing the surgery could be charged with medical battery in the United States. :(
 
MissLeopard83 said:
Hmmm, I wish I knew more about your country to help you. The resident performing the surgery could be charged with medical battery in the United States. :(
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Yeah. I honestly am a pretty understanding person who would've probably agreed if they had told me beforehand that they wanted a resident to perform it with assistance. But as it is, no one even told me after. I've seen my surgeon several times since the operation and he's spoken to me as if he was the one to do the actual cutting. No one's even hinted that another surgeon had any hand in it. It's only because I looked at my chart that I saw that there was a resident there who actually was the one doing the cutting. He did assist so he was in the room, but he didn't actually do it.

It feels like a violation, for sure. Irreversible things have been done to my body by someone I never agreed to have do it. I don't think they did this on purpose I honestly think he just forgot that he had promised to perform it himself, and then just went along with business as usual - which is letting residents do surgeries as they come in. It is a university hospital, so I understand they have to teach, but I never agreed to have someone do this life changing operation when I never even saw them before or after...
 
Ugh, I have bad abdominal cramping again tonight. I got home and took a shower and it started. I took some Donnatal but I'm waiting for it to take effect. It takes about 15-30 minutes, usually. I was under so much stress at work today that I'm sure it had something to do with it. :(
 
MissLeopard83 said:
Ugh, I have bad abdominal cramping again tonight. I got home and took a shower and it started. I took some Donnatal but I'm waiting for it to take effect. It takes about 15-30 minutes, usually. I was under so much stress at work today that I'm sure it had something to do with it. :(
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I hope you feel better soon.
 
I am having serious trouble eating. I've lived off of sweet yogurt, vanilla pudding with jam, and ice cream the past week, which has worked fine - but now that I'm starting to eat actual food more it just doesn't work. I tried making sweet potato soup today. Like completely smooth soup with barely anything but salt and sweet potato. Immediately got a crampy feeling where they operated, and lots of bloating with constant tiny tiny burps which is all I can get out these days. I'm so frustrated. I'm supposed to be able to eat soup, it's supposed to be consistency that is the issue but instead I seem to have my same old reflux reaction (lots of burping) only now I can't actually get the air out and just end up feeling bloated and miserable.
 
MissL, you're on phenobarbital? Are you prone to seizures? That's the med that my dog is on for her seizures. I don't doubt that you fell asleep, that stuff makes my dog zonk out and it also makes her extra clumsy (I don't let her walk up or down a full flight of stairs anymore, but she still sometimes falls off of the 2 little steps when she goes outside or comes back in).

Izzie, that does sound frustrating about the eating & bloating, but please keep in mind that you're still recovering. Be gentle with yourself and take things slowly. If pudding and ice cream are what works, then stick with those for now and very slowly and gradually add in more foods one at a time. And when I say foods, I mean individual ingredients - maybe the soup was just too much all at once. Hang in there, I know it's frustrating, but take baby steps towards where you want to be. You'll get there. Big hugs to you!
 
Cat-a-Tonic said:
MissL, you're on phenobarbital? Are you prone to seizures? That's the med that my dog is on for her seizures. I don't doubt that you fell asleep, that stuff makes my dog zonk out and it also makes her extra clumsy (I don't let her walk up or down a full flight of stairs anymore, but she still sometimes falls off of the 2 little steps when she goes outside or comes back in).
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No, it's an active ingredient in the Donnatal along with atropine, scopolamine, and hyoscamine. It's supposed to soothe the bowel and allow the antispasmodics to do their work. The Donnatal has been a lifesaver! If I didn't have it, I would have been in so much pain last night. I just wish I could figure out why I keep getting these severe bowel spasms. :(
 
MissLeopard83 said:
No, it's an active ingredient in the Donnatal along with atropine, scopolamine, and hyoscamine. It's supposed to soothe the bowel and allow the antispasmodics to do their work. The Donnatal has been a lifesaver! If I didn't have it, I would have been in so much pain last night. I just wish I could figure out why I keep getting these severe bowel spasms. :(
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Wish you the best
 
I can totally relate to the inability to burp. I’ve gained about 10 pounds in the last few years (mostly steroid weight that doesn’t want to come off). I’m not overweight, but the added pounds have affected my hiatal hernia such that I can’t burp at all. I also have to eat small meals or I get awful hiccups, and I have to be sure not to get constipated as that makes it nearly unbearable. I agree that you can continue eating what works and not force the eating if it doesn’t work. Are clear liquids better? Can you drink herbal tea or clear broth? I’m so sorry this is complicating your recovery.
 
I drink tea and try to eat simple foods to the extent that I can. Clear liquids work fine, though some will give me heartburn so I have to be a bit cautious. I'm more concerned about feeling awful than not being able to eat a wide variety of things at the moment. I'm calling the hospital tomorrow to ask about constipation and bloating to see if I can get some stronger laxatives or something. I'm pretty miserable, but it's still nothing compared to the pain I had in the hospital, so I'm still grateful it's not that bad anymore... The hiccups do seem to bring on a nasty chest and throat pain (probably the esophagus) since it irritates the area that's been recently operated on. Hopefully it won't cause any actual damage.
 
ronroush7 said:
Wish you the best
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Thank you! I am seeing my first rheumatologist ever on the 21st to try to get some answers to my joint pain and I wonder if the intestinal spasms might be related to a rheumatic condition. My grandmother and I share a lot of the same health problems and she has rheumatoid arthritis (not saying I have it, but I am at a higher risk for autoimmune disorders).

I'm concerned with the amount of joint/muscle pain I have on a daily/weekly basis since I'm only 34 and I've been suffering with the pain issues since I was at least in my teens. I would constantly go to the nurse's office beginning in the 6th grade with every ache and pain and I suffered from nausea/vomiting and headaches quite a bit. I got a handle on some of it once I got rid of gluten from my diet after finding out I have Celiac disease but obviously it's not completely taken care of. And, if you have 1 autoimmune disorder - like Celiac disease, you are at a higher risk of having co-morbid disorders.

I want to have answers so badly that I've been doing medical research and trying to figure out why I am feeling the way that I do - especially since my depression/anxiety is well-controlled now with the new medication. I'm feeling like I'm being held back from doing the things I want to do because my body won't cooperate. It truly sucks. :(
 
Best wishes to everyone. We all get to deal with different struggles, not fair. I hope we all got our share and it's over with. Like we deserve a gut disease or something...
 
Has anyone had a problem with their doctor's nurse giving them vague answers which make it seem like she's answering before consulting with the doctor? That's the way my GI nurse is acting - she didn't answer my question from Friday. She just told me to hold a PRN medication since she thought I was taking it every day (I rarely take it) and then said that excess mucus in my stool is normal. My GI, on the other hand, told me to contact her if I was continuing to have problems and I'm starting to wonder if the nurse is growing tired of answering my questions so she is just answering herself. I plan to call and see if I can talk to the doctor directly without the nurse interfering. I thought I liked this nurse but I don't like her answers... :(
 
MissLeopard83 said:
Has anyone had a problem with their doctor's nurse giving them vague answers which make it seem like she's answering before consulting with the doctor? That's the way my GI nurse is acting - she didn't answer my question from Friday. She just told me to hold a PRN medication since she thought I was taking it every day (I rarely take it) and then said that excess mucus in my stool is normal. My GI, on the other hand, told me to contact her if I was continuing to have problems and I'm starting to wonder if the nurse is growing tired of answering my questions so she is just answering herself. I plan to call and see if I can talk to the doctor directly without the nurse interfering. I thought I liked this nurse but I don't like her answers... :(
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Not quite the same, but I get very different advice from my surgeon and his two different nurses. I find I get the best advice from one of the nurses, my surgeon and the other nurse seem uninterested in actually giving me complete answers...
 
Miss Leopard:

Can you contact your GI by email? I communicate with my GP that way and it’s really worked out well. I have found that some assistants/receptionists do answer questions without necessarily being qualified to do so. Years ago right before I was diagnosed with celiac disease and I was in terrible pain by old GP’s assistant suggested the pain might be “all in my head”. I was too surprised even to be upset! And that was fortunate because I loved my GP and wouldn’t have wanted my relationship with his staff to be awkward. It’s always really hard when you can’t get past the gatekeeper.
 
I have this problem where I read all the new posts on here, and then I basically respond to everyone in my head, and I forget to actually type it out. Then when I go to actually type up a response, I either forget everything I was going to say, or I can’t remember if I actually did respond, and I wonder if I’m repeating myself. Annnnnd I’m too lazy to go back to check for sure. 😂

MissLeopard, I’ve also had some bad experiences with responses from nurses. Some are great......but some definitely aren’t. When I send a message to my GP, her nurse reviews it first, and if it’s not something she can really answer, then my doctor will write me a message back. The majority of the time I actually do get a response from my doctor, which is nice. I think I remember you mentioning that at one point your CRP was high. I’m surprised that wasn’t more of a red flag, because I don’t think that would be elevated for no reason. And with your family history of autoimmune disorders, you’d think they’d really want to investigate. When I had mine tested (I think only once or twice), it was fine, but my cholesterol has been high for years (basically since I’ve been sick). Finally after a couple years, I had one doctor tell me that high cholesterol is often a sign of inflammation. No one seemed to care before. So honestly, I have no idea what doctors are thinking when they go over blood work results. I can’t seem to make any sense of it haha.

Izzie, I feel sad and frustrated just reading your posts. I want to tell you that you’re still recovering and it’s still early, but I can’t imagine how disheartening that must be. You went through hell after your surgery, so if you don’t get any improvement with your symptoms, that would be completely horrible. I really hope that once you heal more, you’ll start feeling a lot better. You deserve a happy and healthy life!

I actually left the house last week!! Go me! But then it took me days to recover. I had an appointment with my GP to refill my meds and just update her on everything. I pooped 6 times before my appointment.....of course. Then they had me fill out some paperwork, which I wasn’t expecting because I’ve been going there for several years, and I started shaking (my stupid new anxiety!). When the nurse checked my heart rate, it was in the 130s. After my appointment I felt so relieved that it was over, that I went to the pet store to get my cats some treats, went to my dad’s house to steal some food, and went to get a pizza as a reward for my adventurous day. That would’ve been nothing before, but that’s A LOT for me now. My dad drove me to all the places, but still. It sounds dumb, but I was proud of myself. Now I just need some convincing to get my butt to the dentist. Nausea and anxiety plus the dentist are really not a good combination. But I need to go, ugh!
 
akgirl, has anyone ever suggested chronic fatigue syndrome/ME for you? That's what came to mind when you mentioned you needed days to recover just from a simple outing. There was a recent article in the New York Times about it which is where I read about it.

As for CRP, it can be elevated for many reasons. One of them is inflammation, but it's not specific to the joints or gut. But things like simply being overweight can make it go up. And having it elevated once or twice is not usually a big deal unless it is VERY high. We just discussed this with my daughter's rheumatologist.

That said, if there is a family history of RA, you should be checked out by a rheumatologist.

Red flags for inflammatory arthritis - morning stiffness. Warm, red or swollen joints. In RA, especially the hands and feet - usually they will be visibly swollen and very stiff. They will check RF factor and anti-CCP, but you can have seronegative RA (negative blood work). Usually the rheumatologist will do an exam, blood work and maybe x-rays or other imaging (order an MRI or ultrasound for example).
 
I tried talking to my surgeon about the fact that I'm experiencing ALL of my pre-op symptoms again now two weeks after. And he was pretty dismissive, not really engaged in the conversation at all and dismissed my concerns with a generic "it's normal to feel some irritation" comment.

I have no trust left for these people, no energy left to fight them, and nowhere else to turn.

I'm in too much pain to eat or do much of anything, frankly too depressed to even get out of bed right now. I feel like I'm just going to lay here in pain wasting away until I die, at this point. This surgery was a huge mistake, especially at the place where I had it done.

I'm just done.
 
Izzie said:
Not quite the same, but I get very different advice from my surgeon and his two different nurses. I find I get the best advice from one of the nurses, my surgeon and the other nurse seem uninterested in actually giving me complete answers...
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I'm at a crossroads. I feel like the nurse is short-changing me and not speaking to the doctor like she should. I've also started taking probiotics yesterday which, I'm hoping, should improve my symptoms. I bought the Natren Healthy Start Non-Dairy formula and it worked the last 2 times I used it (better than any other probiotic I've tried). I know antibiotics kill the flora - both good and bad - so I'm sure there is an imbalance in my gut. I don't think it's causing the spasms, per se, but I think it is definitely contributing to the diarrhea and, perhaps, the excessive mucus. I scheduled an appointment on the 21st to see my GI again so if things aren't better, I will have the opportunity to talk to her again face-to-face. :)
 
That's our primary mode of communication - thru the patient portal - and the nurse answers all of my inquiries. The doctor never sees them - she just gets a relayed message. :(
 
In another fun turn of events, my incision is leaking pus and hurting pretty bad. It's leaked through 3 bandages today and I try to clean it up but it's swollen and I think there's an issue under the skin that I can't really reach. Got an appointment with a nurse tomorrow but with the way things have been going I feel like I need to see an actual doctor TONIGHT, so I'm on hold with a clinic and hopefully I'll get in. I'm starting to spike a fever, slowly getting up there, and I'm not in the mood to wait 20 hours and get a full-blown infection.

Man I just want things to be better right now. My mother is still here and it's starting to become annoying to both of us. I've told her I'll be okay on my own but she's reluctant to leave when things are so up in the air, and I do appreciate the help, but being almost 30 it isn't the easiest thing having your mother live with you for over a week in your one bedroom apartment...
 
Izzie said:
In another fun turn of events, my incision is leaking pus and hurting pretty bad. It's leaked through 3 bandages today and I try to clean it up but it's swollen and I think there's an issue under the skin that I can't really reach. Got an appointment with a nurse tomorrow but with the way things have been going I feel like I need to see an actual doctor TONIGHT, so I'm on hold with a clinic and hopefully I'll get in. I'm starting to spike a fever, slowly getting up there, and I'm not in the mood to wait 20 hours and get a full-blown infection.

Man I just want things to be better right now. My mother is still here and it's starting to become annoying to both of us. I've told her I'll be okay on my own but she's reluctant to leave when things are so up in the air, and I do appreciate the help, but being almost 30 it isn't the easiest thing having your mother live with you for over a week in your one bedroom apartment...
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Would you be able to get a nurse to come and visit you? In the USA, home health is available for those who are approved thru insurance. Maybe your surgeon or GP could arrange a private nurse so you don't have to keep making the trek out when you are still recovering. :(
 
MissLeopard83 said:
Would you be able to get a nurse to come and visit you? In the USA, home health is available for those who are approved thru insurance. Maybe your surgeon or GP could arrange a private nurse so you don't have to keep making the trek out when you are still recovering. :(
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I wish! The healthcare system here is completely overloaded, getting any kind of care at all is hard right now. That and everyone you speak to has different opinions and advice, even if you tell them the exact same thing. Can't even get in at a clinic tonight so tomorrow it is. Or the ER, but that feels like overkill. I just really don't want a bad infection on top of everything.

I changed my own dressing again, using some antibacterial wash and an antibacterial bandage. I'm hoping that will at least stall the progression overnight...
 
Izzie said:
I wish! The healthcare system here is completely overloaded, getting any kind of care at all is hard right now. That and everyone you speak to has different opinions and advice, even if you tell them the exact same thing. Can't even get in at a clinic tonight so tomorrow it is. Or the ER, but that feels like overkill. I just really don't want a bad infection on top of everything.

I changed my own dressing again, using some antibacterial wash and an antibacterial bandage. I'm hoping that will at least stall the progression overnight...
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Make sure you don't use any hydrogen peroxide. That was one of the biggest boo-boos I made when cleaning my surgical wounds. It actually kills both healthy and unhealthy cells, preventing the wound from healing. It deprives the cells of oxygen. I was told the best thing I could use is Hibiclens (Chlorhexidine is the active ingredient) and keep the wound completely dry (unless, of course, you are instructed to use moist, sterile dressings). I was also given some antibiotic cream like Polysporin which helped the wound heal quicker. If you think you might be getting a systemic infection, let your doctor know so they can give you oral or IV antibiotics. You had an open surgery so, unfortunately, you are at a higher risk of infection. :(
 
My GI nurse finally relented before I said anything about asking the doctor and she said she would consult with my GI to see what our next step should be - what she should have been doing all along! So, my intuition was correct - she was not consulting with the GI before answering. I'm going to have to mention this at my next appointment so they can do something to correct this action. A nurse should not be answering in place of a doctor if it's something that the doctor thinks needs attending. :(
 
Izzie:

I really hope you get to see a doctor today. Your incision looked fine when you saw a nurse—a week ago or so? If there is an infection underneath it could help explain your pain and difficulty eating. Gosh I hope not. Please let us know what happens. I’m so sorry.
 
Izzie!! :( You seriously can’t catch a break at all. I’m so sorry! I wish I could do something to help you. Please keep us posted on your condition.

Maya, thanks for your response. My GP did suggest CFS/ME at one point but she was just kind of like, it sounds like you could have chronic fatigue syndrome. And that was that. At my last appointment she also said that I might have POTS, but that all I can do to help that would be to exercise more.
 
akgirl said:
Izzie!! :( You seriously can’t catch a break at all. I’m so sorry! I wish I could do something to help you. Please keep us posted on your condition.

Maya, thanks for your response. My GP did suggest CFS/ME at one point but she was just kind of like, it sounds like you could have chronic fatigue syndrome. And that was that. At my last appointment she also said that I might have POTS, but that all I can do to help that would be to exercise more.
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I wondered about that because I've been researching a lot of disorders that cause fatigue since I'm experiencing it myself and thought of you when I read about CFS/ME. I don't think I'm at that level of fatigue, but I definitely saw something I'm going to ask the rheumatologist about - Ehlers-Danlos syndrome. It would explain a LOT of my symptoms - especially the Type 3 version which is the least severe. I hope you get answers soon! I'll say some prayers for you.
 
Thanks everyone! No doctor today or tomorrow, but I had a very nice nurse practitioner dress my wound and remove the staples and I'm seeing her again tomorrow morning. I'm hoping she can refer me to a doctor at her clinic right away. Since my fever is not very high they're not super worried, and the infection seems fairly local so far (not the entire incision is affected, most of it looks very nice except for the small inch-long area where it's leaking and a bit swollen).

I did use wipes with chlorhexidine, which was really only a guess on my part, so I'm glad I made a good choice there.

I did mention the fever and dizziness to a nurse at the 24 hour clinic but she claimed if my fever wasn't higher I could wait. I have very little trust left in me for my local health care system, so I'm honestly a bit anxious and fed up, but my mom is still with me and if things progress overnight I'll go to the ER.

I think a large part of my current distress is my fear (panic, really) at potentially having to go back to my surgeon and go back in that hospital if I get a proper infection. I've had flashbacks at night when I try to sleep just of the pain when my pain management wasn't working and no one was doing anything and the thought of going back there or letting that surgeon do anything again freaks me out to the point that I almost have a panic attack.
 
Maya, thanks for your response. My GP did suggest CFS/ME at one point but she was just kind of like, it sounds like you could have chronic fatigue syndrome. And that was that. At my last appointment she also said that I might have POTS, but that all I can do to help that would be to exercise more.
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akgirl - From what I read, that would be the exact opposite of what you should for CFS - exercise can make it worse. But it does work for POTS I believe. Wish they could figure out what it was and get you on a treatment plan!! I believe sarahfh has CFS - she hasn't been around much, but maybe she could weigh in when she next posts.

Izzie, really sorry to hear you have to deal with an infection on top of everything :(!!
 
I've been reading but keep forgetting to comment!

Izzie I'm so sorry you had such a terrible experience at the hospital, I hope the infection stays local so you don't have to go back. Definitely put in a complaint about it that's not acceptable!

Maya thank you you're right I do have POTS and M.E/CFS.

Akgirl feel free to ask any questions you want, I'm happy to share what I can from my experience. I was diagnosed 2 years ago and just recently started some medication to try and help a bit. The test for it is a bit brutal but really worthwhile as it can also show what treatment will be best for you. Things to try in the meantime are as much fluid as you can drink, extra salt and compression stockings. Some lower body strength exercises can help with the blood pooling and blood pressure drops too but you're best getting advice from a physio so as not to over do it.

Quick update for me, I don't want to jinx it but I may be getting my GJ tube next week! I see my GI on Friday so I will find out for sure then, though I know my dietician is planning to push to get it done as soon as possible!
 
Oh and although exercise isn't great for M.E/CFS some gentle exercise can help a little as it helps stop you deconditioning and getting weaker. But again it's best to get a physio helping you get it right as you really do need to start small!
 
sarahfh, if you have any questions about the GJ tube surgery, feel free to ask or PM me. My kiddo has now had a G tube, a GJ tube and a separate J tube, so we have lots of experience (she currently has separate G and J tubes).
 
Izzie said:
Thanks everyone! No doctor today or tomorrow, but I had a very nice nurse practitioner dress my wound and remove the staples and I'm seeing her again tomorrow morning. I'm hoping she can refer me to a doctor at her clinic right away. Since my fever is not very high they're not super worried, and the infection seems fairly local so far (not the entire incision is affected, most of it looks very nice except for the small inch-long area where it's leaking and a bit swollen).

I did use wipes with chlorhexidine, which was really only a guess on my part, so I'm glad I made a good choice there.

I did mention the fever and dizziness to a nurse at the 24 hour clinic but she claimed if my fever wasn't higher I could wait. I have very little trust left in me for my local health care system, so I'm honestly a bit anxious and fed up, but my mom is still with me and if things progress overnight I'll go to the ER.

I think a large part of my current distress is my fear (panic, really) at potentially having to go back to my surgeon and go back in that hospital if I get a proper infection. I've had flashbacks at night when I try to sleep just of the pain when my pain management wasn't working and no one was doing anything and the thought of going back there or letting that surgeon do anything again freaks me out to the point that I almost have a panic attack.
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Your fear is totally understandable. I hope you feel better soon and get the help you need so you heal. :)
 
Thanks for all the advice, everyone! You guys are the best. Sarah, I’ll definitely let you know if I think of any questions.....I’m sure I will.

I recently did a test for Lyme disease. Has anyone else been tested for it? I guess if Lyme disease becomes chronic (if you don’t get treatment soon after being bit), it can cause all kinds of problems. I’m figuring it’s going to come back negative, but it’s always good to rule stuff out (and waste more money).....right?

Izzie, I’m sure you have some PTSD from what you went through at the hospital. It’s totally understandable that you don’t want to go back. I don’t want you going back there!
 
You're all so great! Being able to vent here helps keep me sane.

I actually ended up in the ER last night when my fever spiked. They were understaffed but they took some blood and since it was normal they didn't think it was bad enough to put me on antibiotics yet. I'm changing the dressing often, and a nurse is looking at it again tomorrow. Basically just keeping an eye on it, and my fever has since gone down and I think it's leaking a bit less fluid than it was in the beginning.

I was however super allergic to the adhesive on the dressing they put on it in the ER, so now I have an angry red rash under the tape. Again, something the nurse will probably look at tomorrow. Things feel pretty stable but I'm so sick of having to deal with it at all. Looking forward to a day where I don't have to "keep an eye" on anything medical.

My mother has gone home so I'm on my own! Kind of enjoying not having to be social even though it's a bit uncomfortable to be alone.

Still having reflux symptoms which is so so discouraging but I've decided to wait it out for the coming month since I know it can be a rough few weeks and months initially only to then turn around.

I have decided though that if I need further treatment I'm looking elsewhere. If I need more surgery, I might look into medical tourism and go to Mayo where I've heard people have had very good results when dealing with reflux disease that involves other complicating factors. My disease is not straight-forward, and I need doctors who get that.

Hope you are all doing well, sounds like some of you are moving forward with tests and potential surgeries and I hope you all get good results and the help you need!
 
Izzie said:
You're all so great! Being able to vent here helps keep me sane.

I actually ended up in the ER last night when my fever spiked. They were understaffed but they took some blood and since it was normal they didn't think it was bad enough to put me on antibiotics yet. I'm changing the dressing often, and a nurse is looking at it again tomorrow. Basically just keeping an eye on it, and my fever has since gone down and I think it's leaking a bit less fluid than it was in the beginning.

I was however super allergic to the adhesive on the dressing they put on it in the ER, so now I have an angry red rash under the tape. Again, something the nurse will probably look at tomorrow. Things feel pretty stable but I'm so sick of having to deal with it at all. Looking forward to a day where I don't have to "keep an eye" on anything medical.

My mother has gone home so I'm on my own! Kind of enjoying not having to be social even though it's a bit uncomfortable to be alone.

Still having reflux symptoms which is so so discouraging but I've decided to wait it out for the coming month since I know it can be a rough few weeks and months initially only to then turn around.

I have decided though that if I need further treatment I'm looking elsewhere. If I need more surgery, I might look into medical tourism and go to Mayo where I've heard people have had very good results when dealing with reflux disease that involves other complicating factors. My disease is not straight-forward, and I need doctors who get that.

Hope you are all doing well, sounds like some of you are moving forward with tests and potential surgeries and I hope you all get good results and the help you need!
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I'm glad that you're feeling better. Is your mom close by so she can stop in if necessary? I know how it feels to want to be left by yourself so you can rest, but I also worry that you may need help and not have it around. Mayo IS a good center for research but the hospital in Florida has problems. My aunt used to work there and also was a patient there several times and I'm iffy about recommending them to anyone. She had bariatric surgery and a parathyroidectomy and nearly died both times because of neglect and faulty staff. She was even in the ER one time and they actually lost track of her! They didn't know where she was for at least 2 hours, if not more. So, I would recommend them only for outpatient doctor appointments - not surgery or ER visits. The clinic is good, but not the hospital.

Anyway, my pain was HORRIBLE last night. I got home and sat/laid on a heating pad and it barely did anything. I was forced to take a Vicodin again from my surgery which means my pain is getting worse. Advil is not even touching me now and that is really troublesome. I only take Vicodin when absolutely necessary because I don't want to become addicted to it, but it seems like it's becoming necessary for joint pain control. I don't have many tablets left, either. :(
 
MissLeopard, Thanks for the info! I have only really seriously considered Mayo Clinic in Rochester, but also have looked at Cleveland Clinic. Only in the very early stages of considering that, but it's nice to have some idea of where to turn in the future if necessary. Sorry your aunt had such a bad experience. My mom is about an hour's drive away so it's not far, and she's happy to come back if problems arise. Very grateful to her for having been so helpful over the past few weeks. Also have at least one great friend and a few casual coworkers who I would call if something emergent came up that I needed help with.

Sorry you're having such intense pain, I know how terrible it is. Running out of pain meds has been a concern of mine too this week, I'm not a fan of being on them either but when you need them you need them...
 
Izzie said:
MissLeopard, Thanks for the info! I have only really seriously considered Mayo Clinic in Rochester, but also have looked at Cleveland Clinic. Only in the very early stages of considering that, but it's nice to have some idea of where to turn in the future if necessary. Sorry your aunt had such a bad experience. My mom is about an hour's drive away so it's not far, and she's happy to come back if problems arise. Very grateful to her for having been so helpful over the past few weeks. Also have at least one great friend and a few casual coworkers who I would call if something emergent came up that I needed help with.

Sorry you're having such intense pain, I know how terrible it is. Running out of pain meds has been a concern of mine too this week, I'm not a fan of being on them either but when you need them you need them...
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Cleveland Clinic is better, IMHO. My mom has had numerous good experiences with them and she's been to both Mayo and Cleveland Clinics. If you can afford it, I would go there first.

Yeah, my pain has been hideous. It's never been this bad before so I'm not sure what's causing it. I have an appointment with my GYN doctor on Friday and he has prescribed painkillers in the past but it was for GYN-related problems. I have not seen my current PCP in a LONG time and I'm switching to a new one on the 14th, so I feel weird about calling her. I don't want to be seen as "doctor hopping." I might ask my GYN doctor since he knows my history and maybe, if I tell him that I am in between PCP doctors, he will give me a few pills to tie me over until I see the rheumatologist.
 
Thank you Maya. I think the main thing troubling me about surgery is recovery time, I'm meant to be spending Christmas at my dad's which is a three hour drive. I will be staying there a couple nights but I'm worried I won't have healed enough for the drive to be pain free and safe. Also what sort of pain levels should I expect? I've seen varying accounts, some people seem to find it mildly uncomfortable and others intensely painful.
If it helps for comparison I've had four previous surgeries, two being laparoscopy surgeries.
 
sarahfh said:
Thank you Maya. I think the main thing troubling me about surgery is recovery time, I'm meant to be spending Christmas at my dad's which is a three hour drive. I will be staying there a couple nights but I'm worried I won't have healed enough for the drive to be pain free and safe. Also what sort of pain levels should I expect? I've seen varying accounts, some people seem to find it mildly uncomfortable and others intensely painful.
If it helps for comparison I've had four previous surgeries, two being laparoscopy surgeries.
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I support you.
 
sarahfh -- So my daughter did pretty well with the GJ tube. She was inpatient for 3 days. Most kids are kept at least 24-48 hours, some are kept longer. I don't know how long it is for adults. She woke up in a lot of pain, but they got it under control relatively quickly with IV pain meds.

Her procedure was done by Interventional Radiology - not a surgeon. So essentially they go in with an endoscope and poke a hole through the stomach. No other incisions. In some places it is still done laparoscopically. I think very rarely it is done by open surgery - mostly if they are doing other surgery at the same time.

Some kids are fine and do ok with Tylenol (Paracetamol) or Ibuprofen after the surgery. My daughter got IV morphine for the first day and a half to two days. Every 4-6 hours. And she managed well if it was given on time. She watched a lot of TV to distract herself! She found anything that used her abdominal muscles very painful for the first few days - like sitting up from lying down or coughing or laughing.

She was up and walking about an hour after she woke up.

After the first two days, she switched to oral pain meds. I think she was on those a week, but she tends to heal very slowly because she is on biologics and immunomodulators. But within two weeks, she was healed enough to go to college.

So if you get it next week, I would expect that you'll be fine to go to your dad's for Christmas. But of course, everyone is different and heals differently.

Once she was home, we had some hiccups - she got two site infections but that is pretty uncommon. And I'm sure it was related to all the immunosuppressants.

Let's see...what else. You can't swim for 6 weeks. You'll probably start out with a long tube. My daughter absolutely hated hers. It stuck straight out of her stomach and she didn't like that because it was hard to hide under (tight) clothing. Usually they switch to a button after 4-6 weeks when the tract is healed, but in her case, her tube migrated to the duodenum after the first night (again, that's rare) and so they changed to a button within 10 days so that they could reposition it in the jejunum.

She loved the Mickey button. Very small, very easy to use and no one has to know about it.

She, unfortunately, had major issues with the GJ tube. It kept migrating back to her stomach. Sometimes it would only stay in her jejunum for a few days then it would flip back into her stomach. She had 22 tube changes in one year!! They are meant to be every 3-6 months, so she had a LOT. And for kids they are done with sedation, so that is a LOT of sedation.

Some people have this issue and then have to go to a straight J tube. That is a much harder surgery to recover from (it's an open abdominal surgery) and a riskier tube to have so most doctors try GJ tubes first.

Let me know if you have any questions.
 
I woke up this morning at 4am from my hips hurting me again. I tell ya, I am very tired of this pain waking me up (literally!). So ready to see the new PCP and rheumatologist in the next two weeks!

I am nauseous this morning, too, and think it might be due to the probiotics. I had nausea yesterday so I didn't take the probiotics last night and it seems to be a little better today. I'm using a 3-bottle system where I take one capsule from each bottle. I think, what I might do, is go slower and use one bottle at a time and build up slowly (the directions say you can do this). I want a healthy gut but I think I've got so much going on that it's causing me to feel sick. :(

Anyway, @sarahfhf, how were you tested or diagnosed with CFS/ME? I plan to discuss it with my new PCP next week and also the rheumatologist in 2 weeks. I compared the symptoms of fibromyalgia and CFS/ME (I was diagnosed with fibromyalgia by my old PCP years ago) and my symptoms fit more with CFS/ME than FM. I do not have tender pressure points - I have systemic joint pain that is worse in some areas of my body. I know it's possible to have both, though, too.
 
Maya thank you that really helps, I will be crossing my fingers that it's done next week then and I will make sure I have the option of decent pain relief if I need it. I already know it will be endoscopic and it will be a long tube, here adults aren't often given button tubes unless they are athletes or in a job that would require it. The fixation plate bends it to 90 degrees so it sits flat though so that's something.

MissLeopard I basically had a ton of blood tests done to rule out anything else as my Mum has Lupus, when they all came back fine I was diagnosed with M.E/CFS after 6 months of symptoms. I was 13 when I got sick and 14 when diagnosed so there might have been other things going on in the background and I have no idea what blood tests I had but I didn't have any other testing done. Now I get a lot more joint pain and with my other conditions I may have to have more testing though as they are more common in autoimmune conditions and EDS. Although I doubt it's EDS as I don't get enough points on the Beighton scale, and it's other joints that cause me problems and do funny things.
 

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