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11-10-2017, 07:41 PM   #13171
cmack
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I actually have been using turmeric myself, to good effect. My doctor recommended it to me to add in my smoothies, he said it absorbed far better in the presence of freshly ground black pepper and fresh ginger root. It has been beneficial in my case. I add 3/4 tsp of turmeric and roughly 7-10 ground black peppercorns with a tablespoon sized piece of ginger to a 500 ml smoothie. I am on the high end, as this is generally enough for a liter or more.
11-10-2017, 08:15 PM   #13172
MissLeopard83
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I actually have been using turmeric myself, to good effect. My doctor recommended it to me to add in my smoothies, he said it absorbed far better in the presence of freshly ground black pepper and fresh ginger root. It has been beneficial in my case. I add 3/4 tsp of turmeric and roughly 7-10 ground black peppercorns with a tablespoon sized piece of ginger to a 500 ml smoothie. I am on the high end, as this is generally enough for a liter or more.
Glad it worked for you. I wish it worked for me. My pain tolerance is pretty low - I have fibromyalgia which makes my pain even more prominent. It really stinks when the only thing that seems to help my pain is my worst enemy and there are no real alternatives that are also convenient that I can take to work with me. Rest seems to be my biggest help, but I can't sleep all the time. I'm really hoping a B-12 supplement will help with my fatigue and nerve pain issues.
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11-10-2017, 08:24 PM   #13173
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Hi MissLeopard,

I care about you, sorry it didn't help. You will still be my friend in the end...Ha! That rhymed! I hope you find something that helps, and I will be looking out for anything that may benefit you too! I'm always doing research, stay tuned for more.
11-10-2017, 08:24 PM   #13174
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Check with your GI about NSAIDs - some will allow them if absolutely necessary. I wouldn't be hugely worried if you are only taking them infrequently, especially if you don't have IBD and have another GI disorder.

My younger daughter has severe arthritis and relatively mild/moderate IBD so she is allowed to take an NSAID. In her case, it would be harmful not to take one - they actually reduce the odds of radiographic progression in AS and they help a lot in terms of pain and stiffness. She is monitored very carefully by her GI.

Not all NSAIDs are equal - some are harder on the GI tract than others. Celebrex is probably easiest on the GI tract.

Toradol is usually given via IV. My daughter has had it many times without issues. It all depends on what your GI is ok with.

Other than that, Tylenol, Voltaren gel (topical NSAID so less bad for the gut) and then prescription pain meds, which come with their own risks.
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11-10-2017, 09:16 PM   #13175
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I find most of my pain happens at night, and I'm single so I have nobody to put the lotion in the right spot. The topical versions work, but not if you can't reach. I have even had topical ketamine lotion before and it was so hard to put on that it was not much use. It worked well if someone put it on though. I got it from my compounding pharmacy, prescribed of course.
11-11-2017, 11:18 AM   #13176
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I have an appointment with my GI doctor set up for the 15th at 11:15am to talk about my options since the dietician was not covered by my insurance so now I don't have an option to get personalized advice on low-FODMAP diets. My insurance really frustrates me - they make everything incredibly difficult. I have an HMO thru work and, while I'm thankful I have insurance (I didn't for over a decade), I'm tired of them overruling a medical doctor that I trust.

Anyway, I'm taking it easy this morning because I have a fun afternoon planned with my mom. We are going to see "Murder on the Orient Express" and then have a dinner date at my favorite pizza joint where they have the BEST gluten-free pizza ever! I can't wait!
11-11-2017, 11:53 AM   #13177
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MissLeopard, enjoy the time with your mom
11-12-2017, 12:22 PM   #13178
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I was able to take my little weekend trip after all, propped up on a bunch of pillows in the back of the car to protect my poor injured back. Speaking of, still hurts like heck, to the point that I'm concerned it might interfere with surgery since I can't lay on my back at all still. I'm also pretty swollen and they're supposed to place an epidural pain pump of some kind.

The trip made it clear to me once again why I'm having this surgery. I had informed my lovely hosts about my illness and they did their best to accommodate me but eating made me sick, and sleeping in a too-soft bed made it hard to breathe as my stomach was pressing up on my lungs all night. Looking forward to a time where it will be possible to be a little spontaneous again!

Officially one week and a handful of hours to go until surgery! Starting to get seriously nervous, or maybe what I'm feeling is anticipation, not sure. I'm anxious to have it over with and start the healing process. The fact that there is even a chance of a medication- and symptom-free life in the future absolutely blows my mind.

Also am trying to prep for the hospital. I'm super allergic to hospital laundry detergent and always end up covered in a rash just from having their gowns on for a few hours so a full week in hospital sheets will be... something. Bringing lots of long-sleeved PJs and leggings and lotions and things.

Also those of you who have been in the hospital after surgery: will it be super weird if I bring my laptop? I feel like it would seem super douchey to just pull out a computer and start typing away when you're recovering from surgery On the other hand, it is my #1 source of entertainment when sick, so...
11-12-2017, 08:57 PM   #13179
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I hope the best for you Izzie. I would bring your laptop, my doctor uses his iPhone in the ER. Keep in touch, I'll try not to make you laugh because I know it hurts. I promise.
11-13-2017, 10:47 AM   #13180
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I'm at work this morning but I'm not feeling well. My gut is hurting and, when I tried to go #2, I was about to start crying because it hurt so bad. It's obvious it's going to take a while for my gut to heal. I have an appointment with my GI on Wednesday, so I'm going to make sure I'm covering all my bases. I also feel incredibly nauseous this morning. I was drinking some Gatorade to help boost my hydration but I started coughing when it went down the wrong pipe. Now, my stomach is upset with me and I'm debating whether or not to take Zofran or a Compazine or just ride it out. I've already taken my morning dose of Xifaxan (that might also be causing the nausea) and some Tylenol.

I also emailed my GI's nurse to ask about pain management since Tylenol just doesn't work all that well but I'm concerned that NSAIDs could exacerbate my GI issues.
11-13-2017, 08:16 PM   #13181
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I wouldn't take any NSAID's it has made me worse before. I'm thinking of you, and will keep you in my prayers.
11-13-2017, 08:51 PM   #13182
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I agree with cmack
11-14-2017, 06:53 AM   #13183
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I wouldn't take any NSAID's it has made me worse before. I'm thinking of you, and will keep you in my prayers.
Yeah, I thought since my gut is already super sensitive, it would be best to stay away. I've been using topical stuff like Aspercreme but I can't use that for a headache, so I need to know what I can use safely other than Tylenol if that doesn't help. Good thing I have the appointment tomorrow morning.
11-14-2017, 04:35 PM   #13184
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Izzie you can take your own blanket to the hospital which may help with the detergent issue, I always take my own when I'm I'm. Obviously in post op etc they will use theirs but once you're settled in your bed you could swap them. I also take my V shaped pillow as I can't sleep without it but again your own pillow may help.
In terms of your laptop I've seen loads of people take theirs when I've been in especially for watching films. The only thing I would suggest is get someone to bring it in once you're out of surgery and on the ward, there often aren't lock boxes big enough for a laptop on the ward so they have to go to the main hospital safe and then they take ages to come back to the ward.
Also good luck! I remember you're story from way back when I joined the forum, I really hope this gives you some relief at last!
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11-15-2017, 11:03 AM   #13185
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Izzie you can take your own blanket to the hospital which may help with the detergent issue, I always take my own when I'm I'm. Obviously in post op etc they will use theirs but once you're settled in your bed you could swap them. I also take my V shaped pillow as I can't sleep without it but again your own pillow may help.
In terms of your laptop I've seen loads of people take theirs when I've been in especially for watching films. The only thing I would suggest is get someone to bring it in once you're out of surgery and on the ward, there often aren't lock boxes big enough for a laptop on the ward so they have to go to the main hospital safe and then they take ages to come back to the ward.
Also good luck! I remember you're story from way back when I joined the forum, I really hope this gives you some relief at last!
Thank you! I remember you from way back when as well, how are you doing these days?

I'm actually feeling so zen about surgery now. The closer it gets the more convinced I am that it's the right decision. Don't know if it's the months of CBT therapy at work or what but I'm very calm and confident now. I'll totally bring my laptop then, I imagine I won't have much energy but I have tons of audiobooks and podcasts and movies on mine to keep me at least somewhat entertained.
11-15-2017, 11:17 AM   #13186
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I agree about taking a laptop, go for it. When I was hospitalized last year I brought both my chromebook and my tablet. They definitely helped pass the time.
11-16-2017, 02:19 PM   #13187
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My GI nurse has finally gotten back to me and told me that Tylenol is the only thing that my GI will recommend for something other than GI pain. I have to go thru my PCD or another doctor if I need to get something stronger. Unfortunately, my PCD has been on medical restriction since early this year and I have not been able to see her due to difficulty in setting up appointments (they can only schedule mornings but afternoons are the best time for me due to work). I've been looking for a new PCD but pretty much put the search on hold since I was seeing my specialists.

Anyway, I asked the nurse again about the GI pain because it gets pretty bad sometimes and asked if I could try Donnatal elixir (if my insurance will cover it, that is!) or something else. Donnatal was what my former GI wanted to try me on before my insurance did not cover their practice anymore. Hopefully, we can come to an agreement and find something that works besides Levsin which basically acts like a placebo now. I think my body developed a tolerance to it, or something. It worked starting out but lost effectiveness (I only take it as needed, not round-the-clock).
11-17-2017, 09:41 AM   #13188
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I finally got back to the chiropractor last night and I feel a LOT better. My joints thank me for it - especially my neck and jaw (they were SO tight and he could feel knots in my neck). I did get very nauseous this morning around 2pm - the worst nausea I've had in a while - and I'm not sure what it's from but I took 2 Zofran ODT pills because it was really bad. Fortunately, I felt better an hour later but, during that time, I decided to watch Netflix because sleep wasn't happening with the nausea. I finally went back to sleep at 3:45am and had to wake up at 6:30am for work. It was rough - I almost called out sick but I'm trying to save up for a new car. I forced myself to get here and I feel OK right now so I'm hoping to make it the whole day.
11-17-2017, 11:25 AM   #13189
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Thank you! I remember you from way back when as well, how are you doing these days?

I'm actually feeling so zen about surgery now. The closer it gets the more convinced I am that it's the right decision. Don't know if it's the months of CBT therapy at work or what but I'm very calm and confident now. I'll totally bring my laptop then, I imagine I won't have much energy but I have tons of audiobooks and podcasts and movies on mine to keep me at least somewhat entertained.
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
11-17-2017, 12:10 PM   #13190
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Good news! My GI nurse wrote me back this morning and said that my GI doctor is willing to let me try Donnatal! I have a coupon in case insurance doesn't cover it, so I'm hoping this will provide me with the GI relief I need. I've been having stomach pains and cramping again today. My GI issues are definitely flaring today for some odd reason. After I wrote the last entry, I got really bad acid reflux and stomach cramps. Now, my stomach is gurgling. I'm pretty sure it's because I had apple cider for the first time yesterday since going on my low-FODMAP diet and it's not agreeing with me. It was delicious, but I will not be enjoying again any time soon - I really didn't even have that much (I think I drank like 4-6 oz).
11-17-2017, 12:18 PM   #13191
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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
I am feeling good about it! Nervous but excited!

Good thing you're gaining some weight and strength!
11-18-2017, 09:42 AM   #13192
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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

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?
11-18-2017, 08:50 PM   #13193
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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
11-18-2017, 10:30 PM   #13194
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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.
11-18-2017, 10:43 PM   #13195
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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
11-19-2017, 03:22 AM   #13196
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I just wanted to stop in quickly to say good luck on your surgery, Izzie!! I donít have much advice as far as your family goes, but do whatever you need to do to be the most comfortable and happy. Theyíre worried because they care about you, but sometimes you need to be selfish and take care of yourself. Youíre 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. Iíll be thinking about you! I have a good feeling about this surgery. <3
11-19-2017, 05:22 AM   #13197
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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
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.
Yesterday, 09:06 AM   #13198
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Good luck with your surgery today, Izzie!
Yesterday, 10:12 AM   #13199
ronroush7
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Good luck with your surgery today, Izzie!
I second that.
Yesterday, 08:09 PM   #13200
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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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